The Past Five Years

I was diagnosed with a primary immunodeficiency in 2019. I started infusions roughly 6 months before the first Covid case was reported in my city. Before the world shut down, I had about two glorious weeks of feeling like myself, feeling healthy-ish, and feeling like a 20-something year old for once. It all came crashing down really quickly.

The past five years have changed me and my life so dramatically. It is hard to quantify or put into words just how much of a personal shift I have experienced. I doubt very many people who aren’t immunocompromised would really be able to relate to what I’m trying to describe.

See, the first couple weeks at home for most people were filled with fun new hobbies and virtual social events and the idea that we were all doing this to protect ourselves and our community. Then the boredom set in. Suddenly by late March or early April 2020, less than a year after being diagnosed with my immunodeficiency and only weeks into the pandemic days here in the US, the tone shifted. The rhetoric started to change towards “only the elderly and immunocompromised will die,” which was both inaccurate, scientifically, and shocking, personally. Some states, including my own state of residence, listed people like me as those to exclude from ventilators if there was a shortage. They were already counting people like me among the dead without even considering that they could try to save us. People made comments and actual policy decisions as if the elderly and immunocompromised already had one foot into the grave. That we weren’t human beings living full lives and potentially with years or decades of life ahead of us. People I knew started saying this among those who they thought weren’t high-risk to justify behavior that put others in harms’ way. These comments crept their way onto personal social media accounts and conversations with whoever was within ear shot. I had to listen to clients from my job ramble on about it, not allowed to speak up to say that I was one of those people they hoped would die quickly so that they could return to their social lives. It was the first season of my life I’d ever heard anyone, especially people I knew, make arguments that their social lives were worth sacrificing my life or those like me. That my life was less than. That I was acceptable collateral damage. This endured for the remainder of 2020.

Late 2020/2021: miraculously, a vaccine was made available. I was afforded some ounce of protection after close to a year of monumental isolation, though we had no way to know at the time how well my immunocompromised body would hold onto that protection. But as surely as the earlier rhetoric took hold, so too did the conspiracy theories around that ounce of protection I thought may soon come. Low vaccination rates, people acting as if nothing was going on, and extremely high rates of infection. Again, more time in isolation through a good chunk of the year.

2022/present: conspiracy theories around ALL vaccines have continued to flourish and have grown in popularity from their once-fringe spot in conversation. Childhood vaccination rates have dropped for diseases like HiB, pneumococcals, pertussis - all infections that I’ve had in the past and struggled quite a bit with as an immunocompromised individual. The willingness to sacrifice people like me has grown. More people are embracing well-known antivaxers who have been insinuating for decades that people like me ought to just be acceptable collateral damage. Even some who are well-acquainted with me and my medical history.

Now, we are reaping the consequences of those events with an ongoing measles outbreak. Tragically, a child in the US has died, and I am already hearing the beginnings of those who are trying to explain away their deaths. To justify their selfish actions regarding public health to avoid having to confront the fact that they are willing to endanger the vulnerable in our communities. Young children. Babies. Immunocompromised people like myself. It will get worse, and I fear we will go down the same path as the Covid pandemic, willingly telling immunocompromised community members that our lives are disposable.

You can only hear people you know and people you don’t speak so openly about your role as collateral damage for so long before it breaks you. Having to hear over and over again the justification for preventable deaths. If getting infections that left you struggling to breathe wasn’t enough. If having a post-viral neuropathy that affects your basic autonomic functions like your heart rate wasn’t enough. If having to worry that the next infection will give you permanent lung scarring that will shorten your lifespan wasn’t enough. If having to live in fear of the autoimmune comorbidities that can come with your condition and can also be life-threatening wasn’t enough…what will ever be enough to change their minds and make them care about how our communities protect the vulnerable? I worry that the answer is this: that many won’t care until it kills someone they know, and by then, it’ll be too late. I worry that maybe even then, some won’t care.

I sit here broken by the past five years. By having to hear, directly and indirectly, for years about how my life is disposable. I am angry and quickly losing hope for change. I don’t know how to change minds, but I hope and pray that it happens before we face more unnecessary tragedy. That the change of heart comes in time to save lives. I fear it won’t.

“Retiring” at Thirty

Later this fall, I will be leaving the full-time workforce. Retiring at thirty would be a cause for complete celebration for someone who is fully healthy and able-bodied. For me, it is just a little bittersweet.

Throughout our relationship together, my husband noticed that a 40+-hour work week often leaves me drained and exhausted. He noticed that schedule leaves me little time to optimally take care of my health. He offered months before our wedding that I leave the full-time working world after we got married, but only if that is what I wanted. At first, I was really unsure about the idea. I love to work on projects that challenge me and to be part of an organization where I feel I can make an impact. On the other hand, I could feel the strain it was putting on me physically. I knew that if I wasn’t at work all day for 5 days a week, there were things I could be doing to improve my health. I could have a more mindful exercise routine. More conscientious diet. Reduce exposure to infections, especially during cold and flu season.

I recognize that it is a privilege to even have the choice, from a financial stability standpoint, to make this decision. However, I couldn’t help but feel like I was failing at the “thriving with chronic illness” thing if I couldn’t work full time, have a reasonable social life, and also manage my health. I was sad to think about missing office birthday celebrations and catching up with my colleagues during lunch. It also made me sad to think about the fact that I was smart enough and capable enough to do so well in this career path, and I wouldn’t get to see the track that my career would take over the years if I left.

It sounds silly, but I was also a little worried about how others would perceive the decision. Because my husband is in a career where he earns a comfortable living, would people think that I had always intended to leave my job once we were married? Would they call me lazy? Would they think that my husband expected me to give up my career once we were married, even though he left the decision entirely up to me and has been incredibly supportive of my decision and ALL of the emotions that have come with it? Would they not see how much I have always wanted to make an impact in the communities and the world around me? Would they only see me as sick or as a “spoiled housewife” going forward?

Thinking about those things all make me a little sad, but you know what? My career is not the most important thing in the world. That was perfectly clear to me while thinking about the choice I had. My health is more important. My loved ones are more important. Ultimately, I can still find other ways to engage my mind and my talents. I can go have coffee or lunch with my old colleagues still to keep up with them, and I can even join in the birthday celebrations. I can do any of those things without working a schedule that puts such a strain on my body. To some degree, people have made judgmental or snarky comments about the decision; however, those who know me best AND know my health struggles have been incredibly supportive. Technically, only my husband’s and my opinions really matter, but it certainly does help to have those closest to us be supportive, too.

Long story short: two months ago, I put in my notice to leave my full-time job after the helping to make sure that a specific, large project that is my brainchild will make it over the finish line. I have had the opportunity to oversee a massive project that will leave a literal mark on my organization. Seeing that project through to completion is giving me enormous satisfaction as I am making my exit from full-time work. I don’t regret my decision and how I have approached it in the slightest. I have had time to begin looking at other ways to engage my mind and talents, and I’ve even found some options to work a much-reduced schedule to earn a little extra money on my own still. It still feels bittersweet, but mostly, I’m grateful to have the option to leave on my own terms. I am excited for what the next chapter will bring, and I know that making this choice will mean having the best possible health that I can within my control.

Chronically yours,

Jen

Knowing Your Worth

What happens when you survive the things that felt monumental just a short time ago? When you spend some time at your own rock bottom, the emergence feels like a second chance. A second chance to savor all the good moments. To love on your support system a little harder. To do all the things you wanted to do. To live in a deeper and more meaningful way.

A little over a year ago, I was recovering from my CSF leak. I was in the beginning of a serious worsening of my dysautonomia, a result of deconditioning from the bed rest during my leak. I was in the diagnostic process to find out that I had a small fiber neuropathy and a hypermobility disorder. I was exhausted, sick, and overwhelmed. I worried that there might be a time where I couldn’t work anymore. I worried that people in my circle would get tired of my health issues. I worried that I wouldn’t get to do the hobbies I loved most anymore. I worried that I would never be able to live an active lifestyle again. I worried that the person I was dating would use my illnesses as a reason to not be with me.

It was amazing and freeing, though, to realize that none of that matters at all when it comes to my mental health and my sense of self-worth. That we are inherently worthy of dignity and respect, even in the midst of the worst-case scenario. I spent so much time and energy feeling like less of a person because of my health issues. Like more of a burden with every new note on my medical chart. Even before all of that, I didn’t exactly have the strongest confidence in myself, so the string of health crises felt soul-crushing. I cried so many tears. I let other people in my life make me feel like I was a burden. I let a partner make me feel like I was a burden. The period of stabilizing health after all that chaos came with the realization that it wasn’t just my physical health that I was fighting for anymore. I needed to work on myself and my surroundings. My current lifestyle was sucking the life out of me, and I desperately needed to learn to love myself, unconditionally and unapologetically.

I started therapy. I left a long-term relationship that was not supporting or serving me. I leaned into the platonic friendships with the people who were kind and supportive and loving. I cut out the people who treated me with anything less than the dignity that I deserve. I went back to hobbies that brought a fire to my soul. I cannot put into words the way that this second chance transformed my life. I started to breathe lighter. Feel happier. Be fulfilled by the things and the people in my life. Other people who cared about me started to take notice too. They could see a new joy in me that hadn’t been there for a long time.

When I started dating again for the first time in years, I did so with the confidence that I would not accept anyone less than someone who loved everything about me, even the flaws. I did so, knowing that I could be perfectly happy on my own, and I would only allow someone into my life that added to that. I was approaching life with a level of confidence and respect for myself that I’d never known before then.

Who would have thought that hitting rock bottom with my physical health and scraping my way back to some semblance of normal would be the thing that really challenged me to be a better version of myself, in more ways than one? I think it’s natural for issues with our physical health to chip away at our self-esteem and self-love, but I also think it’s so powerful when we are able to work beyond that to see that our value as people has nothing to do with our physical well-being. To buck society’s notion that chronic illness somehow makes us “less than” or “damaged goods” or a burden. To surround ourselves with people who love us whole-heartedly for who we are. It dramatically changed my life for the better. It can be scary to take that first step to change your life, but oh my. It is so worth it down the road. If you are needing to take that step, I hope you find the courage to dive head-first into it.

Chronically yours,

Jen

When the Storm Starts to Clear

The first half of this year felt like a fight to just exist almost every day. I was in constant survival mode. What does it look like, though, when the storm starts to clear?

It doesn’t necessarily happen all at once. Sometimes, the biggest struggles start to taper off over time, and one day, you look back and realize how well you’re doing. I had a moment like that this week. I was sitting in my rheumatology follow-up, and she ended the appointment with “well, you can follow up as-needed, but you don’t need to schedule a follow-up with me otherwise.” Music to my ears. I realized the only appointments I have left for the rest of the year right now are the regular immunology follow-ups to make sure that all my levels look good and my annual PFT to make sure my lungs are still working optimally. Then I started thinking about how stable my health has been lately compared to the early part of this year.

CSF leak: resolved. Out of control dysautonomia/POTS: back under control. Exercise tolerance: getting better every day and currently at the best it has been since probably early November 2020. Infections: cleared that pesky respiratory infection and hoping to keep it that way. Also learned that we are not experimenting with an immunoglobulin dose reduction again. Heat intolerance: well…can’t win them all, but at least the weather is about to start getting cooler soon! This isn’t all by chance. This is all the result of meticulously following guidance from several specialists for months and having a team of physicians that work so seamlessly with me as things change. It’s the result of lots of small decisions and some big decisions about how I want to live and make the best of the situations I have been given.

I’m not cured. I won’t be. However, I am feeling like I’m in a more manageable place. My thoughts throughout the entire day aren’t focused solely on how to function. I am able to start enjoying some of the things I really love again. I just feel lighter. I feel like the burdens I’m carrying aren’t suffocating me anymore, and I am perfectly content with that.

Sometimes when you’re in the height of the storm, it can be really hard to see the light at the end of the tunnel. It felt like one thing after another for so long, but I’m in a good place right now. There are still some unanswered questions from my test results that I received this summer, and I don’t know whether the physical improvements will last forever. My guess is that someday there will be another storm to weather, and I’m sure I’ll get through that one too with enough time and care. It felt too important not to document this feeling though. The feeling like the storm has passed and I can finally breathe a sigh of relief.

If you’re in the middle of your storm, keep holding on tight. You will get through this. For my future self, I’m leaving this here as a reminder to you too, just in case you need it down the road.

Chronically yours,

Jen

Reflections on One Year of Quarantine

Today marks one year since the first case of SARS-COV-2 was detected in my home state. It’s one year since I went into quarantine, for what I initially thought may just be a month or so. I could sit here and write about how hard the isolation of the past year has been or how much my personal life has changed as a result of the pandemic, but I have already devoted similar blog posts to that topic. Something struck me last night when I was reflecting back on this time instead, and I am GRATEFUL.

That seems crazy to say, but I have my life, my job, and my family. I still have my home and access to medical care. I have technology to stay in touch with the people that matter to me. In all the ways that matter most, I am blessed beyond measure. I’m still here a year later.

I was diagnosed with Primary Immunodeficiency less than a year before a global pandemic broke out. Would I still be here if my diagnosis had been delayed by another year? That’s a question that I cannot answer with certainty. Had I not known a year ago that I had a high risk condition, I may not have been as cautious as I have been. That is the “what-if” scenario I have been grappling with for some time now. Maybe I wouldn’t have been working remotely for a year or having groceries delivered to my porch. Maybe I wouldn’t have thought to wear a mask before it was widely recommended. It is possible that my team of doctors saved my life.

I suppose you could say that protecting me from any pathogen could have saved my life, but protecting me from one as aggressive and difficult to treat as SARS-COV-2? I have to believe in my heart that I dodged a bullet, figuratively speaking. The deaths, the organ damage, the long term complications. I was potentially spared by a timely diagnosis.

So today, on the one year anniversary of our lives being flipped upside down, I am choosing to be grateful for the knowledge that has protected me. I mourn those who may have still been undiagnosed and didn’t fare so well. I thank my lucky stars for all of you that I have met along this journey, and I promise to keep committing myself to raising awareness for those who may be spared by a timely PI diagnosis.

For information and free resources on the warning signs of Primary Immunodeficiency, you can visit www.info4pi.org or www.primaryimmune.org.

Chronically yours,

Jen

Ticking Time Bomb

“Your body is like a ticking time bomb.” This was a comment from the neurologist I saw last month for a suspected spontaneous CSF leak, while he was reviewing my medical history and the reason for my visit. I haven’t related to anything so much in a long time. I have felt like a ticking time bomb lately, in every sense.

I always felt like I knew what my future would look like. I’m a planner, and I have always known what I wanted. Now, I have a hard time guessing what the next year will look like, much less the next 5 or 10 years. When I got the first diagnosis, Primary Immunodeficiency, I knew that it was possible that I would eventually be diagnosed with other conditions. I thought I would have years, maybe even decades, before that began to happen. I thought that I would have years to learn to navigate the PI world and to get to start enjoying my life again before I ever had to worry about juggling multiple illnesses. It started to snowball in just over a year though.

I had just gotten my PI infections under control when the pandemic broke out. Literally, I had enjoyed about 2 weeks of feeling healthy and carefree when the pandemic forced me into isolation. Less than a month after that was when I got the POTS diagnosis, and less than 2 months later, I got the chronic idiopathic urticaria diagnosis. A couple months later was a nasty respiratory infection that broke my antibiotic-free streak, followed not long after by a CSF leak and the potential for another new diagnosis, a connective tissue disorder that could have caused the spontaneous CSF leak. Just in the past few weeks, I have also started to notice some new symptoms that I had to alert my cardiologist about. I think it is fair to say that anyone would be struggling with all of this.

If you have been following my blog and think that I have been taking it all in stride, you aren’t the only ones. I’ve been fooling even myself most of the time to think that I am managing it all just fine. It’s kind of my signature move, honestly. In fact, I would argue that 85% of my typical grief cycle is spent in the denial phase, every single time. I either act like whatever happened wasn’t a big deal and move on, or I hyper-focus on the practical “tasks” that I can handle relating to it and never give myself time to check in emotionally. Any time something big happens, I “handle it” until the day that I can’t anymore, and then I explode like a bomb. Just like my “ticking time bomb” body, my emotions will tick away until BOOM. They spew out without control. That bomb went off this week.

“It’s just too heavy.” We were mid-conversation, and this was all I could think. The thought repeated in my head on a loop. I realized as it was all spewing out of my mouth that everything in my life right now feels heavy and that I had no emotional (or physical) energy left to spend on normal-people concerns. Politics, current events, a social life, anything. I don’t have the emotional energy to care about any of it, even though I know I should. Over the last several months, I have been using every ounce of my energy to make it through the day, to carry the hard things by myself. The person I was talking to sensed that I’ve been having a hard time. Just like when this happened with the PI diagnosis, he realized it before I did.

I felt lighter after saying it out loud. I feel lighter saying it over and over again to myself this weekend. “It feels heavy, and it’s normal that it should.” It doesn’t magically mean that the burden is no longer heavy or that I suddenly have the emotional energy for normal concerns. It just means that I am finally able to admit to myself and to someone else that this has been hard. That I have work to do to make it feel less consuming.

I don’t have the answers on how to not be a ticking time bomb yet. I can’t change the fact that my body is a mess right now. I’m not a miracle worker. That bomb is one that nobody has the answers on how to diffuse yet. I do, however, have the control to try to stop being an emotional ticking time bomb. In fact, I’m the only person who has that control. Maybe, though, admitting this all to myself in writing will hold me accountable. To do better next time. To give myself the space to grieve and have a hard time. To give myself the same grace and compassion that I would give anyone else in the same position. To be able to admit to myself and others when things feel heavy, before it feels like it is consuming my life.

Chronically yours,

Jen

Merry, Happy Struggling Through Holidays

The holidays are a time of joy, celebration, and family. There is gift-giving, caroling, holiday parties, and more food than anyone can imagine. I love the holidays just as much as the next person, but sometimes, the holidays can be difficult, especially for those with chronic illness. This is going to be a controversial statement, but I stand by it: the cut-backs on social gatherings during the holidays this year due to the pandemic is a bit of a relief for me. It’s not that I won’t miss seeing extended family members or having a cocktail with colleagues, but the recovery period that crowded events demand from me means that all of these celebrations, back-to-back, take a serious toll on my health.

I spent the last few years sick throughout the final stretch of Christmas. Work-related parties for my job and my significant other’s, holiday parties with friends, family holiday events, going to local holiday festivals, etc. It ends up being exhausting - and it also exposes me to many different pathogens in a short period of time. Coincidentally, all the biggest holidays happen during the peak of cold, flu, pertussis, sinus infection, etc season. Because of my primary immunodeficiency, this means that I end up sick after the first few events leading up to Christmas. Once I am sick, I struggle through a fog to just “get through” the rest of the holiday season. By the time I get to Christmas Day with my immediate family, I am surviving on Vick’s, tissues, sinus rinses, hot tea, and medications. I sit on the couch, half-awake, barely able to enjoy the festivities.

The first few times this happened, I was still undiagnosed and thought that it was just a coincidence that I kept ending up sick. The first holiday season after being diagnosed, I reached out to a veteran mom of three sons with a primary immunodeficiency. She’s had something in the realm of 14-15 years of experience of life with PI. I was hoping she could give me some magic secret, but the advice she gave me sounded too simple and also a little impossible at the same time: pace yourself, put healthy foods and fuel into your body to support it as much as possible, and that it’s okay to say no to some things if I need the rest. In hindsight, those seemingly “not magical” answers are the key to all of it.

I used to think that I had to be at everything and couldn’t say no to some events (especially work-related ones) while going to the ones I really wanted to. I stubbornly continued my same approach, and as usual, I ended up sick in early December - with pertussis this time. Talk about misery. I was so sick that I still ended up missing some of the work events that I felt like I wasn’t allowed to miss anyways. After having to learn the lesson over and over again the hard way, I have made it okay for myself to rest and to skip some events. I have realized that the only events worth risking infection afterwards are the ones that I most want to go to. I have given myself permission to do the things I need to in order to stay healthy throughout the entire holiday season.

2020 has given me the perfect opportunity to practice the advice that I got from that veteran PI mom: so many holiday events are cancelled. Like, almost all of them are cancelled. While some may say that this will make the holiday season less special, it gives me the opportunity for it to be even more special with the ones I care about most. It gives me the easy route to being healthier for the most important parts of the holiday season - spending the time with my immediate family. We will still decorate, bake cookies, watch holiday movies together, and exchange gifts. We will still cook more food than we ever need to eat. I will have all the best parts of the season without sacrificing my health and muddling through it.

Perhaps you have GI issues that make holiday foods difficult, or perhaps you struggle with fatigue and don’t have the energy for so many events. Perhaps your allergies/sensitivities get overwhelmed by the Christmas trees and holiday scented everything that are everywhere this time of year. If your illness can also be a difficult struggle throughout the holiday season, go ahead and give yourself the permission to take care of your health first. Give yourself permission to not sacrifice your health for the things you think you have to do, because the truth is that you deserve to be healthy enough to enjoy the season like anyone else, even if you have to do it in your own way.

Chronically yours,

Jen

Plasma Donation: A Response to The Guardian’s Recent Article Condemning the Plasma Industry

Arwa Mahdawi, a friend just sent me your opinion piece about the evils of the plasma industry. Quite frankly, I would have preferred to send you a response directly, but The Guardian requires that a complaint about content be limited to no more than 500 words. This topic, in which you scratched just the surface of the issue, is far too complex for anyone to explain in 500 words or less. I found your opinion piece to be, at best, under-researched, and in the worst case scenario, outright dangerous to those of us who rely on plasma-based therapies to live. It is not just you, though. You are certainly not the first columnist to demonize the plasma collection process in the US, and I am sure you will not be the last. The one thing that these articles have in common is that they are often woefully and negligently under-researched, and they completely ignore the very patients who rely on these donations. These articles are typically full of one-sided criticism, but none of them offer alternative solutions to ensure a continuous, adequate plasma supply. My biggest fear is that one of these articles will some day go viral, and the fall-out will threaten my life and well-being. Perhaps it is the collective privilege of columnists like you, who are likely relatively healthy and have never needed a plasma product to just survive, that prevents you from seeing the whole picture.

First, I would like to point out that the only use for plasma that you mentioned in your entire article is for the treatment of severely ill COVID-19 patients. While this is a great use of plasma, you failed to research and mention a single other use for plasma therapies. This is important, because it is such a big reason for why plasma companies have to pay for it in countries where it is legal to do so. Did you know that plasma based therapies are used to treat a variety of extremely rare and incurable diseases? In some of these conditions, it takes over 1,000 plasma donations per year to treat just ONE patient. In contrast, donation centers commonly say that one whole blood donation treats an average of 3 different patients. Those plasma therapies that require such high amounts of donation are also life-long, regular treatments, and without the treatments, the patients would die. Those conditions include various forms of primary immunodeficiency (genetic diseases similar to “Bubble Boy Disease”), hemophilia and other bleeding disorders, alpha-1 antitrypsin deficiency, and so many more. These are just some of the life-long conditions where plasma is life-giving. There are also a variety of others treated by plasma, in which the patients benefit from a drastically improved quality of life for their incurable illness, including several very debilitating neurological conditions. It was a disservice to patients like myself for you to completely ignore the desperate health needs of all of us in your article.

Second, did you know that plasma-based therapies regularly face threats of shortage? Some plasma-based therapies, such as immunoglobulin, take 7-12 months to become usable products after collection, so shortages cannot be addressed in a timely manner when they happen. It takes intricate planning to prevent a shortage, and even that still doesn’t always work. What does that mean for us when there is a shortage? It means that patients like myself can be denied refills of medication and be at serious risk for life-threatening complications, even after missing just one dose. It means that if I were denied treatment due to a shortage, any infection I contract could become very serious or even fatal due to the fact that my immune system doesn’t function properly even against common illnesses. It means that a child with a bleeding disorder that has to miss treatment could fall on the playground and bleed to death. How does the plasma industry ensure a steady supply? They pay for plasma where it is safe and legal to do so. Payment for plasma ensures the vital, regular stream of donations. You even mentioned in your article that the US supplies 70% of the global plasma supply, but you never expanded on why that is or why it is vital that we do.

You also failed to mention the time commitment difference in the process of donating blood and platelets compared to plasma. The actual procedure time for blood donation is around 15 minutes. The procedure time for donating platelets is roughly 30 minutes. You did, however, accurately mention that it takes roughly 90 minutes to donate plasma. That is a far greater strain on someone’s time than blood or platelet donation. How easy do you think it is to convince someone to sit for 90 minutes with a needle in their arm to donate plasma? If someone is giving up 90 minutes of their time to sit in a chair with a needle in their arm, I think that we have to find a way to prove to them that their time is valuable. Right now, we do that by paying them for the time that they could be using to do many other, more pleasant things. The plasma industry certainly wouldn’t be spending so much money to pay donors if they could keep the same level of donations for free, so if you can think of a better way to show donors that we value their time, please feel free to enlighten the rest of us. You seem to offer plenty of criticism but no solutions.

I will agree with you that it is regrettable that young adults are intentionally trying to get infected with COVID-19 in order to get paid for their plasma that is rich in antibodies. However, how is that the plasma industry’s fault? These people are over 18 years old - legal adults who are fully capable of understanding the risks of such decisions. At some point, we have to start holding adults accountable for their own decisions, because intentionally exposing themselves to COVID-19 for a small bonus in compensation is a result of their own poor decision-making. The same collection centers paying small COVID-19 bonuses are also still paying for regular plasma, so the students could have still donated for cash without contracting COVID-19. Just like you, I wish that there were more financial safety nets for the most destitute. Many of the rare disease patients that plasma therapies treat worldwide also fall into the category that needs more social safety nets. However, the plasma industry is not responsible for that lack of a safety net. A number of other societal and policy issues are responsible for that. It is a problem far too large for a few drug companies to solve. I am not naïve. I know that many donors do it for the money, but desperate people also do far worse things for extra money than donating plasma. The plasma companies aren’t stealing it from donors’ arms. Just like any other medical procedure, it requires informed patient consent after receiving an explanation of the risks.

The plasma industry isn’t the only medical industry that pays donors for pieces of their body and attracts mostly young, low-income participants; yet they are the only one regularly vilified in the press for it. People get paid to participate in clinical trials, with far less research proving the safety of those procedures or sometimes no knowledge of the safety at all. Men can sell their sperm for a profit. Young women can get paid quite a bit of money to donate their eggs, a risky and invasive procedure that can lead to serious complications or even death. Women can get paid a significant sum to become surrogates for families that cannot carry their own children, a task that can also be very dangerous and even potentially fatal. In your own article, you mentioned that complications from regular plasma donation include migraines, numbness and fainting. Perhaps you have never donated blood or platelets, but these are some of the exact same side effects of unpaid blood and platelet donation. Is it more unethical to pay someone for their eggs or surrogacy so that a couple can conceive a child (both beautiful and life-giving sacrifices to make for another human being), or is it more unethical to pay someone to donate plasma so that patients with rare diseases can literally just survive? They are all life-giving donations, some far more risky than others, so why only focus on the plasma industry?

Next time you write an article on such a complex topic with real-world, life and death consequences, please do more thorough research. Speak with the patients that are heavily affected by the impacts of your words, the paid donors who feel villainized and embarrassed as a result of your judgmental and mightier-than-thou attitude, the highly-reputable patient organizations that fight tooth and nail every day for adequate patient care, and the plasma industry leaders who are desperately trying to avoid another shortage that could be fatal to their patients. The issue of payment for plasma donation is not as black and white as you would like to think. It is many more shades of grey, and your refusal to allow for that possibility in your article will unfairly taint the practice of plasma-donation and keep people from donating to life-saving therapies. I am not saying that paid plasma is a perfect system; however, rare disease patients cannot afford to throw the current system in the trash until there is a viable alternative. You have a platform with a level of readership that I dream of advocating to, and this week, you chose to use that platform to ignore and further hurt the future of rare disease patients like myself, rather than lift us up.

Chronically yours,

Jen

Why I Don’t Cling to a Cure

The title sounds depressing right? It’s not though, I promise. It’s my way of clinging to joy. I don’t pin the hopes of my life on a cure for my primary immunodeficiency. Right now, science has not yet identified the gene responsible for my specific disorder. There are clinical trials collecting DNA to try to do just that, but without the basic info like the genetic cause of the disease, we are likely still a long way away from a complete cure. If I pinned the hopes and dreams of my life on a cure for my disease, I would spend every day living in a state of waiting and disappointment. If I lived on the hope for a cure, I wouldn’t have the strength to get out of bed in the mornings.

A lot of people try to reassure me when they learn of my diagnosis by saying things like, “maybe there will be a cure soon.” While I appreciate their hope, I don’t find it productive for me to think like that day in and day out. This is one of those topics that is really hard to explain to someone until they just get it. Usually, it’s because they are experiencing something similar that they understand. To someone who is completely healthy, this can be a hard concept to grasp, because they cannot yet fathom how we learn to accept and live with incurable diseases. I will do my best to explain it here, though.

I know for a fact that there is still so little known about my condition. I WANT a cure for my antibody deficiency, don’t get me wrong. I would be at my immunologist’s door in 20 minutes if she said she could cure my disease. However, I also know that I may be living a much sicker life if I had been born before science had a chance to catch up to me. Instead, I pin my hopes on the existing treatments on the market. I live in gratitude that I was diagnosed at a time that science knew how to diagnose. I am grateful that there is such an effective treatment in place for a disease as rare as mine and for one that is still in its infancy of research. 50 years ago, the immunology field knew very little about primary immunodeficiency diseases compared to what they know now. In that time, they have developed treatments that, while not curative, are extremely effective at managing the disease.

My existing treatment plan gives me milestones to celebrate and tangible progress. It has given me a break from the constant infections that are the hallmark of my disease, and as a result, my quality of life is infinitely better than it was just over a year ago. I get to live in the joy that science and the field of immunology are evolving so rapidly that I can live a relatively normal life now. In the meantime, researchers are slowly starting to find therapies that may be curative for other forms of primary immunodeficiency whose genetic origin is already known, so I also get to experience vicariously the joy and celebration for those fellow patients and their families. Perhaps my turn will come during my lifetime. Even if it doesn’t though, I know wholeheartedly that I will still live a full life, because I refuse to pin all my hopes for my future on a cure that could be many years away still. I will continue to live my life as fully and joyfully as possible, utilizing currently available therapies, because I am only given one chance at this life. I don’t want to waste that chance waiting for something that may never come in my lifetime while science has already given me the tools to make the most of every moment.

Chronically yours,

Jen

The Hidden Sacrifices of Chronic Illness

Chronic illness comes with the somewhat expected sacrifices: things like cancelling plans when you aren’t well, financial costs, lost job opportunities, etc. The sacrifices often permeate so much deeper into your life though when you have a serious chronic illness, especially one that is difficult and expensive to treat. Up until this week, I never intended to share this part of my life on my blog. It felt too personal, too sad. I realize now that it is an injustice to this blog not to share it in full disclosure.

My illness has put a distance in my romantic relationship after 5 years together - a literal physical distance. My significant other is a physician. He just graduated from his fellowship training in June of this year. I can’t tell you how proud I am of him. I have a lot of personal experience with physicians, and I think he will be phenomenal for his patients. After his graduation, he took a job in an area at the opposite side of the United States from where we were living. We talked about it a lot, and that job was the best option for him at the time. Here’s the thing though: I couldn’t go with him. We are in the middle of a pandemic, and by nature of primary immunodeficiency, I am HIGH RISK for infection and serious complications. Moving across the country with him right now, a 30 hour drive away from where I live, is dangerous in the current public health crisis. In addition to that, healthcare coverage and access is…extremely intricate and complicated at best.

We are not married, so I would most likely not have been able to get coverage under his employee health plan. I would have lost my health plan by leaving my job and moving cross country. I would have been in a bind to find a job asap in order to obtain health insurance asap. Then, I would have had to find a new specialist in a city that does not have a great selection of immunology specialists. I would have had to fight insurance all over again for coverage for the very expensive immunoglobulin infusions that my life and wellness basically depend on. In this entire process, I would have had a ton of exposure during a pandemic, and I would have likely missed several doses, if not months’ worth of infusions, making me HIGHLY susceptible to any infections (again, all during a global pandemic).

Why does this all matter? My significant other and I have been doing long distance since early July (almost 3 months now with no end in sight), all because of my primary immunodeficiency. While my disease is currently well-controlled, a single thing like a job in a new city can create an absolute mess of a decision for someone with a chronic illness. It is an aspect of illness that we and our loved ones experience that is both deeply painful and often incredibly secretive. We don’t talk about it, because it feels too personal, even in this space, because of the way that my illness has directly impacted my relationship. I have been guilty of keeping this piece of 2020 to myself, because it’s a hard piece to share for many reasons.

I want to scream about how unfair it is. Trust me, I know all too well that life usually isn’t fair, but it still makes me want to scream. I want to scream about how my partner shouldn’t be forced into sacrifices because of my illness either. We both understand why it is necessary, but that doesn’t make it stink any less. I want to scream about how if the general public pulled their weight to end the pandemic, it would lessen the time that my partner and I spend apart. I want to scream about how much my life is tied the actions of others right now. I like being solely responsible for the things that happen in my life, so having to rely on others to do their part is not in my nature. I want to scream about how people are complaining that they can’t go to a bar, but they have no idea how much I WISH that was the biggest sadness I was dealing with right now. Every time someone says that those of us that are high risk “should just stay home so the rest of the world can get on with their lives,” it makes me seethe with anger, because what they are saying is that they expect me to continue making all the sacrifices indefinitely so that they can go to parties and bars and sporting events and festivals. I want to scream about how I deserve to get to enjoy my life too and live in the same city as my partner again.

We sacrifice more than just health and money and lost job opportunities due to our illnesses. The term “we” doesn’t just include patients, either. It also includes those most closely around us: partners, parents, children, friends, etc. We all sacrifice pieces of ourselves that are so hard to quantify. I feel like revealing this part of me right now is just a rambling rant, but if this rambling rant makes one person feel less alone, then it has served its purpose. That is the whole point of this blog and why I felt compelled to finally share this part of my life. I don’t have the answer to solve these problems, but please know that I see your hidden sacrifices, even when you can’t find the words to talk about them yourself. I know how much those hurt your heart, and I am here alongside you for the journey.

Chronically yours,
Jen

Natural Disaster Preparation

I live in an area of the U.S. that is notoriously prone to hurricanes. I grew up doing natural disaster prep, and I can tell a newbie how to prepare for a storm in my sleep. Heck, I even work in an industry that practically revolves around natural disasters. Being chronically ill has changed some of the considerations for storm prep though, and for the first time in my life, I find myself having to think about new ways to prepare. Not to mention doing all of this preparation in a pandemic. Truly a unique exercise in emergency preparation. Luckily, we have had FOUR close calls with hurricanes this year to practice. No direct hits, as all four storms veered in another direction later on, but I still had to start the storm prep numerous times in anticipation of those storms.

I still have to do all the normal things: bring outdoor furniture inside or tie it down somewhere securely, have bottled water on hand, etc. In the past, I would have also stocked up on batteries for flash lights, nonperishable food in case everything in the refrigerator spoils, and just one case of water for myself in case the storm caused drinking water to become unsafe. Now, those considerations are so different. I almost always have some doses of my immunoglobulin infusions on hand, and those have to be temperature controlled (not to be stored above 77 degrees Fahrenheit). If the power goes out during a storm here in Louisiana, the inside temperature would increase to somewhere in the neighborhood of the 80s or 90s, maybe even higher. Spoiled medication would literally cost thousands of dollars to replace, regardless of how many doses I have left on hand.

My newest diagnosis of POTS is also a concern. I have to drink a lot of fluids every day. Like A LOT of fluids. This means that whatever the standard water considerations are for hurricane prep, I have to plan for much more. I also have to plan to have high-sodium snacks and electrolyte drinks on hand. The other major part of hurricanes with POTS is the heat. My tolerance for being in the heat has decreased dramatically over the past few months, so sitting in a hot home with no working air condition during this time of year would be an unbearable way to spend several days if a storm were to cause major power outages.

Because of the combined concerns of my infusion medications and POTS, I now leave to drive up to my parents’ house for every single storm. They live an hour north of my home, and they have a whole-house generator to continue to power the air condition and refrigerator if a storm were to cause power outages. Prior to my illnesses, I would have never left home for minor tropical storms and hurricanes, but health considerations add another dimension to natural disaster prep that healthy individuals do not have to consider. The trick is to have your plans in place long before a natural disaster comes your way, so that when it is crunch time, you know exactly how to execute your plan and nothing gets forgotten in the rushed shuffle. If you live in an area prone to natural disasters, what are some of the ways that you address considerations related to your chronic illnesses and/or treatments?

Chronically yours,

Jen

Managing a Household

If you are having a rough go of it, managing your household can feel like an impossible task. All of the cooking, cleaning, maintenance, etc. This can be hard for many of us living with chronic illness, especially those of us who experience fatigue on a regular or semi-regular basis. How do I manage all of that with chronic illness? Delegating, planning, and good habits.

There is one major task that I have delegated to a professional: lawn care. I tried to do this one once entirely on my own at a time when my PI was just diagnosed and not yet treated. I didn’t have an inkling yet about my POTS either. I was so sick after cutting my grass in the heat of the Southern US, and my mom insisted that I never cut my own grass again. I’m grateful to her for making me see that it’s okay to NOT be able to do something. I haven’t regretted delegating that piece of household maintenance once since that day, so if there are tasks that take too heavy a toll on your body, I’m here telling you that it is more than okay to delegate to a professional or ask someone you know for help!

The rest of the household just takes a little planning for me to keep up with it, even during times when my illness is kicking my butt. First, I have the task that has to happen every day: cooking. I have to eat, so I had to find ways to nourish my body, even on days when I didn’t have the energy to cook. I do this by keeping plenty of pre-cooked homemade meals in my freezer. On days when I have a good amount of energy, I cook large amounts of foods that can be frozen. Soups, pasta sauce, stuffed bell peppers, etc. When I am feeling sick, I can just take a frozen meal out and defrost it with minimal effort. In addition to pre-cooked frozen meals, I use a slow cooker. Slow cookers can be a chronic illness patient’s best friend. I have found plenty of recipes online that call for me to just dump all the ingredients in and turn the slow cooker on. Very minimal effort required, and it is pretty easy to find a decent slow cooker for a reasonable price.

Cleaning and laundry takes a little less planning than the cooking, but it can still be very daunting to tackle if I let it build up. For me, it was more about developing regular habits and figuring out what tasks needed to be prioritized. I try to do at least one household task a day to stay on top of it, and because of my immune deficiency, I prioritize the tasks that involve sanitizing surfaces that will grow bacteria. No matter how I am feeling, I always clean the bathrooms and kitchen at least once a week. I do these on the weekend when I don’t have to expend energy on my day job. On days when I am not feeling great, I opt for the tasks that are easier and take less manual effort, like laundry. On days where I have more energy, I opt for the tasks that I can’t do on my really sick days, like cleaning the floors or the furniture. My significant other gifted me a robot vacuum this year for my birthday, which made my household maintenance much easier. While some robot vacuums are very expensive, there are some far less expensive alternatives out there that work well.

I also have one golden rule in my house that I try to stick to with no exceptions - I do not go to bed with dirty dishes, pots & pans, etc piled up in my kitchen. Once a pile starts, it builds up quickly. Waking up to a pile of dishes to tackle stresses me out, so I do myself the favor of always cleaning up whatever I cooked with that day. If I’m struggling with energy, I try to cook with as few tools as possible so that the clean-up is easy. I certainly have times (especially after an infusion) where I may accidentally leave a pot soaking in soapy water overnight, but overall, this rule helps me stay on top of things so that I don’t have to expend a lot of energy cleaning up a large mess all at once.

My household maintenance methods may not work for everyone, but it is helpful to start developing a routine that works for you. Focus on the items that have to get done first, then fill in the gaps with the ones that you want to accomplish but could wait if you are having a rough day. Most importantly, do not be afraid to ask for help if there is a task that you cannot do. Overextending yourself on one task is the quickest way to guarantee that you will not be able to handle the rest of what needs to be done.

Chronically yours,

Jen

Having a Chronic Illness in Your Youth

Your 20s and 30s come with plenty of complicated new life problems: starting your career, finding love, debt, self-discovery, moving out on your own, etc. When you add chronic illness to the mix, especially if you are in the process of being diagnosed in your 20s or 30s, it adds a dimension to your life that most of your peers cannot relate to at all. The things that your peers do to blow off some steam when they are stressed may not be things that you are able to do on your sick days. Older adults tell you that this is the time in your life to do the crazy stuff and live it up before you settle down, but having a chronic illness at this age may mean that this piece of advice feels like more of a reminder of all the things you are missing out on. Sometimes, you feel like you cannot relate to anyone else around you.

Your friends will make tons of plans, take lots of trips, party all night long. You will need extra rest, sick days, and scheduled time for medical needs. They are on a first name basis with their favorite bartender, and you are on a first name basis with your favorite phlebotomist. They may have extra money to spend on frivolous things and splurge buys. You may spend every spare dime on your medical care. They are throwing all their extra time and energy into building a fabulous career, but you may be struggling to hold a job at all, depending on the severity of your illness. They are starting to have children, and you are wondering if you will ever have the energy to have a family. Your friends that are the same age may not be able to relate to your experiences, but if they are friends that try hard to respect you, they will learn to adapt to be more inclusive of you. They will listen with a kind ear and never hold it against you when you have to cancel. Still, having great friends does not completely negate the experience gap that you feel between yourself and your healthier peers.

The loneliness of being in a completely different place in life from your peers can be frustrating at times, but there’s a few things that I do to take care of myself when this aspect of illness gets me down. First things first: when I find myself struggling because I am seeing the social media posts of all my friends’ exploits, I give myself a social media break. It really helps me to take a break from looking at what I feel like I am missing. I find something to do that will make me happy, even if I am not feeling the greatest. This might look like starting a vegetable garden or reading a good book or trying out a new recipe or hanging out with a good friend on the porch. The best part about this is that I can tailor the activity to how I am feeling that day. I also always take advantage of the really good days! I try not to overdo it so much that I actually feel sicker afterwards; however, I have to use these days to do the things that make me actually feel my age. I may go out for a drink with friends, have a beach day, go to a local festival, take a walk around the city, etc. I focus on the things that I wish I could do on days that I am too sick, and I save them up to use on a good day.

Lastly, I found friends that just “get” it. Having another young chronic illness friend will remind you that you are definitely not alone in this. These friends may come from local disease-specific fundraisers, meet up groups through patient organizations, or through different online platforms. I have met some great chronic illness friends through all of those avenues, and I have even found some with the same rare condition. Having an overall positive chronic illness crowd around you can make a drastic difference in your approach to dealing with chronic illness in your 20s and 30s. Have other ways of coping with the “Fear of Missing Out” in your youth? Leave them in the comments for all of us to see!

Chronically yours,

Jen

The “I Hope You Feel Better Soon” Paradox

It comes from a good place in their hearts. You know that, and I know that. Knowing that it comes from a good place doesn’t change the pit in your stomach that the phrase gives you. When someone finds out that you have a chronic illness and they respond with “get well soon”, it just leaves a bitter taste in your mouth.

If you are the person that says “I hope you feel better soon,” please don’t stop reading, because I want to explain. For those of us with diseases that have no hope of a nearby cure or even remission, it just reminds us of the simpler life that we will never get back. For my primary immunodeficiency, the gene responsible for my particular condition still hasn’t even been identified. While there has been gene therapy success in some other primary immunodeficiencies, the likelihood of that option for mine any time soon is slim. Instead, I rely on an infusion therapy that gives me a better quality of life, but this is a lifelong therapy that will never fix my illness, only manage it. So when someone says “I hope you feel better soon” in response to my revelation that I have a rare and incurable disease, it just feels like something that is so far out of reach.

The sadness isn’t because we have no appreciation for the sentiment behind the words. We do. We always appreciate when someone genuinely wants to wish us well. The words themselves just make us long for a healthy person’s life, where you get sick and feel better in 5-7 days. It reminds us that when this infection or flare subsides, there will certainly be another one to follow, and it is just a matter of time until we are unwell again.

The next time that you have the urge to tell a friend with an incurable disease to “feel better soon”, try these alternatives instead to show that you care: I hope your treatment gives you a better quality of life. I hope that your symptoms are more manageable soon. I hope that you have more usable days. I hope that you feel well enough soon to socialize. I hope that this infection clears without too much trouble. I hope that your doctor is able to find a better treatment option if this one isn’t working well. Just try to say something that acknowledges that you know it is a long journey, but you hope that it is an easier one for us. That will lift our spirits and show that you care more than “I hope you get better soon” ever will.

Chronically yours,

Jen

Opportunity Knocking: COVID-19 and Advocacy

The global pandemic is one of those things that is obviously a bad thing. With it comes a unique opportunity though, and the primary immunodeficiency community and those with other immuno-compromising conditions cannot afford to let it pass us by. For once, the entire world is talking about what it means to be immunocompromised and what we can do to protect those people. Many of the things that this community of patients has been advocating about for years is center-stage right now, and we have to capitalize on the media attention to advance the conversation.

Patients that are immunocompromised, especially those of us with primary immunodeficiency, are more prone to severe, frequent, and long-lasting infections. Your minor cold or sinus infection could become fatal to us. It could also just as easily turn into an infection that lasts for months, requiring several courses of antibiotics (or even IV antibiotics) to treat and clear up. We are forced to take more sick time than the average employee because of this. Sometimes, we even have to dip into our vacation days, because we don’t have enough sick days for the year. Some cannot work at all, because their condition is too debilitating to be in a public work environment daily.

Many of the amenities that would have benefited our community for years became accessible overnight when the pandemic hit the US: easier access to grocery delivery and curbside pickups, more frequent cleaning of public places, telehealth visits with our providers that were covered by insurance, greater awareness of the dangers of exposing immunocompromised individuals to pathogens when you go to work/school sick, more flexible attendance policies for people when they are sick, and greater awareness around the importance of plasma donation. We could certainly be bitter that these things only came about when illness affected the “healthy” community instead of just us, but instead, I think we should choose to look at it as an opportunity for greater awareness.

We need to make sure people understand why it is important for us to continue to have the option of telehealth visits during cold and flu season. It is too easy for us to catch something and become very ill after sitting in a crowded waiting room while everyone around us is coughing and sniffling. We need people to understand how many infections we may be able to avoid if our coworkers, friends, and family were more mindful of staying away from us and staying home when they are sick. It would also drastically improve employment options if our employers gave us an option to work from home without penalties when we are sick.

Lastly, convalescent COVID-19 plasma has been talked about in a big way. Major celebrities like Tom Hanks are sharing on their social media about the importance of plasma donation, but let’s remind everyone that plasma donors are ALWAYS essential, even when the donor does not have COVID-19 antibodies. I am able to go about a more normal life because plasma-based therapies full of antibodies to many different pathogens exist. Plasma therapies also treat conditions like hemophilia, Alpha-1 Antitrypsan Deficiency, and even some types of cancers and neurological conditions. Plasma, like many other blood products, always seems to be in shortage or on the brink of shortage. Those of us on immunoglobulin therapies are potentially one product recall away from another major global shortage. Yet, plasma treatments are often the only options available for the patients that need it, and they are often lifelong therapies. If just a few of our friends became regular plasma donors, we may be able to help make a huge dent in the need for plasma products.

We all have to make an effort to take advantage of the public’s attention to make sure that these changes endure beyond the scope of this pandemic. It is okay to be frustrated by the fact that many of the amenities only came about when everyone else needed them, but we also have to be more vocal than ever to make sure that we are educating the public about why these very important changes must still be available to us when COVID-19 is no longer a major public health concern. We may very well have the perfect opportunity to make life after COVID-19 easier for all of us and for the generation of patients that come after us. It is time to push harder than we ever have for the sake of our entire patient community.

Undiagnosed

The entire world can understand that it is difficult and stressful to live with a chronic illness, but only those who have walked the long road to seeking a diagnosis know how difficult the “undiagnosed” journey can be. Sometimes, it can be harder than life after diagnosis. Uncertainty by itself is incredibly stressful. If anyone around you is doubtful of the reality of your illness, it can be overwhelming.

My process of actively seeking a diagnosis lasted roughly two years. There were subtle signs of disease 6 years prior to that. This is just a brief description medically of my “undiagnosed” road: ER visits with mysterious illnesses in college, a spinal tap, a lymph node biopsy from a surgeon who made me feel like I was nuts, a tonsillectomy and adenoidectomy, countless rounds of antibiotics, hives from the antibiotics I found out I was allergic to, and roughly two years of my life where I was so exhausted that I felt like I was barely alive. I didn’t have a diagnosis in my chart, so urgent care doctors treated me like I was exaggerating to get a sick note to get out of work.

Every time a doctor has a new idea to run with, it gets your hopes up or it scares you half to death. I was evaluated for lymphoma more than once due to the persistent swelling of lymph nodes. The first time was terrifying. Revisiting that possibility was even more miserable. There were numerous other ideas that came to mind: some terrifying in their degenerative effect on health; some, a diagnosis of exclusion that could take years to get to the bottom of; some, without any hope of an effective treatment. When the lab results for those ideas inevitably come back as “normal,” you don’t even really feel relieved. Let me explain. When you feel physically normal, you may feel relieved to know that your health is in order. When you feel so unwell all of the time, there is no relief in the fact that science cannot figure out why. It isn’t that you want something to be wrong; it’s that you already know something is wrong, but nobody can figure out what it is. The neurologist that examined me for overwhelming fatigue spent the vast majority of an entire appointment trying to convince me that I was probably just depressed, because I was close to tears in his office when he said all my labs came back normal. In reality, he was the sixth specialist I had seen in a few months’ time, and I was just desperate for someone to know what was wrong.

You may even start to feel some guilt for not feeling relieved when labs come back normal. You start to doubt your own body and whether you are imagining the whole thing. You feel guilty for lumping yourself into the same categories of people who have “actual” diseases. It’s a bit of an imposter feeling. Here’s the thing though: there are a lot of diseases out there that are difficult to diagnose. Not every disease presents the same way in every patient. The symptom that may give the biggest clue to your diagnosis may not have even reared its ugly head yet. Perhaps it is a more defined pattern of clues that needs to appear. Don’t give up your search, because scientifically-speaking, the odds are that you are not imagining things at all.

Chronically yours,

Jen

A Letter to the Doctors Who Didn’t Give Up

Dear (my favorite) physicians,

There are plenty of literature and memes out there in the chronic illness world about the doctors who didn’t believe us, who called us hypochondriacs, or who gave up when none of the labs showed one of the “usual suspects.” This is not about them. I choose to leave them out of this particular story. This is for the doctors who may not have had the answer right away but kept searching anyways. This is a thank you to the primary care physician who kept referring me from one specialist to another to make sure that we found an answer. This letter is for the primary care who saw the potential of diagnoses of exclusion and kept crossing off the conditions we needed to exclude to get to the bottom of it. This is for the primary care physician who was willing to admit that he wasn’t sure what was wrong with me, but he was always willing to keep looking alongside me. This is a thank you to the doctor who went home at night after work and kept reading and researching for me.

I want to thank the ENT who ran one culture and diagnostic test after another to document my file. I want to thank the Hematologist/Oncologist who ran every possible lab she could think of in one swoop to push my case along FAST. Thank you to the Immunologist who was patient when the first round of labs came back normal and suggested that we retest, because my recent medical history just wasn’t quite right. Thank you for fighting a 2 month long insurance appeal battle alongside me to make sure that my treatment was covered. Thank you to that same specialist who listened carefully when my health wasn’t improving and adjusted my dosing when I expressed these concerns.

Thank you to my three main healthcare providers for coming up with protocols to deal with my illness once we had a definitive diagnosis so that we could rapidly address any issues. Thank you all for not telling me I’m just depressed and sending me to psych when I broke down in tears in your offices, because I was desperate to have my old life back. Thank you for believing me and never making me feel like I was crazy. It was partially thanks to you all that I found the strength to keep coming back to continue searching for an answer. My length of time until diagnosis was less than HALF the average length of time to an antibody deficiency diagnosis, and it is absolutely because all of you fought for me. That is no small thank you, because as I have learned since being diagnosed, delayed diagnosis can lead to permanent organ damage with my condition. You all played a part in preventing that.

It is so much easier to just move on to the next patient and say that nothing is wrong when the usual suspects don’t fit. I know that many physicians are busy and over-scheduled, and it causes burn-out in your profession. If any of you were ever feeling the burn-out, I never noticed, because all of you made me feel like I was more than just an appointment slot. All of you, especially my primary care physician, did what I wish every provider would do: commit to your patients and to ruling out any possible cause of illness until you find the answer. I wish every provider would recognize the desperation in their patients voices when they say that something just isn’t right, and I wish that they all treated their patients with the same dignity and kindness that all of you showed me. Thank you for being my advocates every step of the way and for playing a part in giving me my life back.

Chronically yours,

Jen

Body Positivity: A Chronic Illness Body

Chronic illness can do some weird stuff to your body, and sometimes, treatment can do even weirder things. If your illness is invisible, it may make you feel even more self-conscious about the way your body looks in a particular moment, because the people around you can’t see that your illness or treatment causes the changes. As a woman (and a young woman, especially), I have felt embarrassed, stressed, and self-conscious by some of these changes myself.

Pre-treatment, when I was sick all the time, I felt that I looked the roughest in my life. My hair and nails were so brittle, because I was constantly sick. My skin was unpredictable. The bags under my eyes from the fatigue couldn’t be covered by any amount of makeup. Acquaintances would comment that I looked “so skinny” as a compliment, but all I could think was that this person isn’t seeing how exhausted and sick I was feeling, regardless of how well-meaning their comments were. The truth is that I felt outright frail, because I was constantly ill. This body just felt weak and worn out, as a result of an endless cycle of respiratory infections, stomach bugs, antibiotics that upset my stomach, and having no appetite from the combination of all of this. I am certainly not the only one either. My good friend Mary, who shares the same diagnosis as me, went through something similar. She was always thinner prior to diagnosis, because she was battling infections, just like I was. Even when people were giving her compliments, they were hard to feel good about, because on the inside, her body felt so embattled. The body she was living in didn’t feel like her own, and her acquaintances weren’t noticing how tired she was feeling.

As soon as I started treatment, I began getting these pockets of fluid where my immunoglobulin would deposit immediately after an infusion until my body absorbed it over the course of a few days. It literally looks like two big, slightly red bumps the size of maybe half a lemon under the skin on my thighs, right where I infuse. Really, it’s a super hot look during swimsuit season. After several months on this treatment, I started to feel healthier, but I also put on more weight than I ever had in my life over the course of several months. Even though I knew that this was largely because I was starting to feel well again, it still took some adjusting. Some of the clothes that I had loved for years no longer fit me or looked quite right, and I was feeling pretty crummy about being at my highest weight ever. I was terrified of the upcoming summer months and putting on a swimsuit, because of the added weight and medication lumps.

A few months ago, I ran into a college friend during Mardi Gras that I hadn’t seen in a while. One of the first things she told me was that I looked healthy. She commented that my hair looked fuller and stronger and that I looked like I was glowing compared to the last time we had seen each other. I could’ve cried and hugged her at the same time. It was the most genuine and insightful compliment I had ever received. Less than a week later, I attended a friend’s wedding, where she (the freaking bride) took time out to tell me how healthy I looked and that I had a spark back that she hadn’t seen in a while. I don’t know if either of these friends knew how much I needed to hear this at the time, but they probably will after seeing this blog post. Their encouragement and heartfelt compliments helped me start to love this newer, healthier body, because I fought so freaking hard to feel like myself again.

Women are already held to extraordinarily high beauty standards, and we are constantly bombarded with images of unrealistic beauty on social media, in movies, on TV, etc. With a chronic illness, that pressure is even more intense, because we are also comparing ourselves to healthy individuals all over social media and in our friend groups whose bodies are not affected by the ups and downs of chronic illness. Even when we know EXACTLY why our bodies are changing and why we can’t help it, we all still struggle with body positivity. The truth is, we just have to be kinder to ourselves. We fight health battles that many others don’t deal with, and we have to take pride in the strength of what our bodies and souls do every day. I find myself reminding my brain of this every time I feel anxious about wearing swimsuits with my infusion bumps visible or when that old dress doesn’t fit anymore. Take pride in feeling healthier and getting your glow back when you are feeling good. Focus your energies on your overall health and well-being, instead of picking yourself apart, especially when your health is in a rut. Give yourself some grace and compassion when your disease or treatment is wreaking havoc on your body, because I know that many of you would give that same kindness to those around you if they were going through the same thing.

Chronically yours,

Jen

Making the Most of a Medical Appointment

I’ve heard a lot of people in the chronic illness community complain about appointments with their doctors or specialists that are less than productive. While we cannot control everything that goes on in the appointment, I do think that there are some things that we can do to try to guide the appointment where we need it to go. This is true whether you are still seeking a diagnosis or whether you have had your diagnosis for some time.

1. Write down every single thing you need to talk about in that appointment. If you expect to discuss some symptoms or medication side effects, be sure to write down things like when those started and the frequency that they occur. Write down what makes it worse or better, what medications you have tried to use for it (even just over the counter meds), etc. These are questions that your doctor will likely ask, and it is helpful for you to think about it and have it written down ahead of time.

2. Keep a typed up list of conditions, current medications, allergies, names of your other specialists, etc. We all know that list of questions that the office asks us for every time we visit. If you have a typed list of these things that you update regularly, you can just print a copy to give to your doctor or their nurse when you arrive. This will save them time at the start of an appointment, potentially leaving you with more time to address the reason for your visit. This is also a handy item to carry on you if your condition lands you in the hospital on a regular basis.

3. Use as much hard data as you can. When I went to my appointment to discuss altering the dosage/frequency on my infusions, I had tracked every infection and every course of antibiotics that was necessary to treat breakthrough infections since my last appointment. These are the kind of specific hard examples that help your doctor more easily gauge what is going on with your health. Some conditions and symptoms are more nebulous, but try your best to be specific about how usable and productive your days really are. You may even want to track it in a spreadsheet or a notebook to help you keep track of the data.

4. Try to stick with only what is relevant. If you get off topic or go into details about the condition that aren’t relevant to the conversation, you and your doctor are losing precious time together to address your actual concerns. The extra details may also water down the message that you are trying to get across.

5. Don’t get caught up in your frustration if the doctor is running late. We have all been there, waiting in an office for an hour or more, because the physician is behind schedule. I can say from personal experience that I have certain doctors that will squeeze me in same-day, no matter how busy they are, due to the nature of my disease. Sometimes a particular patient’s issue is more complex than the 15 minute appointment slot allowed for. Give your doctor some grace, because they are most likely running late due to their responsibilities to their other patients. I promise, they hate running behind as much as you do, and you are wasting your time with them by complaining about your wait. One of the easiest ways to avoid a long wait in the office during your appointment is to be one of the earliest appointments in their day.

6. If you are able, bring someone along with you that can write down notes on what your doctor discusses with you. This may help you better understand what was discussed after the appointment or remember the names of conditions or treatments. Having someone else there ensures that you can be fully engaged in the conversation with your doctor while that person is taking notes. If you can’t bring someone with you, don’t be afraid to take notes yourself, and ask your doctor to repeat important things, if necessary, so that you can jot them down.

7. If you are seeing an entirely new healthcare provider who has never treated you before, consider bringing some very brief literature on your disease, especially if it’s a rare condition. Another primary immunodeficiency patient recommended this to me. Many doctors have never heard of my specific diagnosis unless they work in the specialty that treats it. It is nearly impossible for primary care providers to know ever single disease. I carry a small book from the Immune Deficiency Foundation that has a section dedicated to the basics of my disease. You could also print out a webpage from a reputable source like Mayo Clinic, the CDC, etc. This may be particularly handy for you in an urgent care or ER setting.

These are just a few things that should help to make your appointments feel more productive and help give your physician the clearest picture of how your health is progressing. They will appreciate your effort to be more clear and concise, and you will reap the benefits of having strategies to prepare yourself for upcoming appointments. If you have any more tips for making appointments more productive, please leave them in the comments for others to see!

Chronically yours,

Jen

When You Wear a Mask

Our world has changed quite a bit in the past few months, hasn’t it? If you had told me 6 months ago that I would be stuck at home for 3.5 months and counting and that I would have to “jail-break” just to go to my boyfriend’s medical fellowship graduation, I would have never believed it. I wouldn’t have believed that I would feel anxious to be at that graduation or even guilty for disobeying my immunologist’s orders after the fact. The most recent and widespread change is that wearing a mask is becoming the new “it” trend in 2020, but the reason why goes far beyond style. When you wear a mask in public, it is a sign of respect for those around you. It’s a sign that you value someone else’s safety above your own comfort. It is a sign that you value “high risk” lives as much as anyone else’s. When you wear a mask, you are showing the world that you believe those with chronic illnesses are not disposable.

When you wear a mask, you are actively committing yourself to slowing the spread so that businesses can sustainably stay open. You show that it’s important to you that employees can safely work in their jobs so that their paychecks can continue to exist. When you wear a mask, you are saying that you want to make sure that employees at that business don’t get sick and have to take unpaid sick days while financially recovering from being furloughed. It’s a sign that you care about that employee’s elderly mother who lives with them or about that employee’s immunocompromised child. When you wear a mask, it shows that you understand that not all high-risk individuals “look” high-risk, so you never know who you may be endangering if you don’t wear one.

When you don’t wear a mask and say things like “only the elderly and immunocompromised are at serious risk,” it says that our lives are somehow less valuable than an otherwise healthy person’s life. When you make those comments, it tells us that you see our lives as collateral damage and acceptable losses in exchange for your comfort and sense of normalcy. When you say these things, you make it okay to yourself that we die from something that possibly could have been prevented. When you say “only those with chronic conditions,” I don’t think that you realize how many people are affected by chronic conditions and how many different chronic conditions exist. When you argue that not wearing mask is about your freedom, you are missing the point that your “freedom” in this scenario is directly taking away mine. Every person that chooses not to wear a mask to show their freedom of choice is actively choosing to contribute to the reason why I am still not allowed to go grocery shopping.

Before now, I have been uncomfortable confronting someone in person who wasn’t wearing a mask in my presence, and I have been uncomfortable to be the only one wearing a mask (the very few times I have been in a public setting lately). Confrontation of any kind is completely against my nature. I’m not used to begging for anything, but I BEG you to read the science behind why it’s important to wear a mask. I BEG you to try to still practice social distancing whenever possible and to wear a mask out in public spaces. Even if all that science and data turned out to be wrong, the worst thing we did was try to do something to protect our immunocompromised friends’ well-being, so there is no harm in trying. However, there could be harm in not trying. I am BEGGING you to really think before saying things like “only the elderly or immunocompromised,” because my life has value. Remember that when you wear a mask, you are silently telling me that you believe that my life, my friends’ lives, and strangers’ lives matter and are worth protecting.

Chronically yours,

Jen