Ways to Support Your Chronic Illness Friends
When I started this blog, I actually had a friend request a blog post at some point about how our healthy friends can best support us. Perhaps a list of dos and don’ts. I was actually very touched by this request. It reminded me that your supportive loved ones do want to know how to best support you through this process, but since they do not live in our shoes, they don’t always know the best way to do that. I’ve done my best to compile some simple suggestions, but feel free to leave your own in the comments for others to see!
Never make your chronic illness friends feel bad if they can’t attend a social gathering. We want to, I promise. If we have to cancel, it is because we physically do not have it in us to get off the couch that day. Maybe it’s an infection or overwhelming fatigue or miserable joint pain. Just know that we are not being flaky or avoiding you; we are just unable to function in public that day. We also already probably feel pretty guilty to have to cancel. If you want to find an alternative way to socialize, you can always ask us if we’re feeling up to company that day, and if so, what kind of activity we are up for.
Please keep inviting us. In my sickest times, I worried that every time I was too sick to visit with friends would chip away at the friendship and that eventually, these friends would just stop inviting me altogether. It did happen with some friends, honestly. I was really hurt by the exclusion, and this can be one of the most isolating aspects of illness. I know that I’m asking you to put your own pride aside when I say this, but just keep inviting us, even if we hit a rut for a long time where we cannot make it.
Don’t suggest anything that you think may cure or treat us, unless you have a medical degree or unless we ask. Trust me when I say that my doctors have worked very hard to treat me, and they are specialists in treating this particular disease. It is extremely off-putting when someone I know tries to sell me their products like essential oils or vitamin supplements by saying things like “I bet this will cure all your health issues.” To be perfectly honest, I find it to be a somewhat predatory sales practice to use someone’s illness to try to push products on them. If I approach you for suggestions to help with a certain side effect or symptom, it is totally fine to share your opinions. If you want to approach me for a sale the same way that you would your healthy friends, that is also totally fine. We are constantly bombarded by suggestions from people that aren’t on our medical team, and it is an exhausting cycle.
Please avoid socializing with us when you are sick, even if just mildly ill. Many of us are immunocompromised because of our illness OR because of the medications that treat our illness. Your mild sore throat or runny nose can turn into a much more severe illness for us. This does not apply only to the current COVID-19 pandemic. This goes for strep throat and colds and the flu and anything else. Just tell us you aren’t feeling well, and leave the decision up to us whether or not we can socialize with you. It makes me feel so respected when my friends or family actively consider my health when they aren’t feeling well.
If you are checking in on how we are feeling, show genuine interest in the question and response. We get asked a lot about how we are doing, but I feel really defeated when I watch that person’s eyes glaze over mid-conversation if I give them an honest answer. A lot of chronic illness patients will answer with “fine” or “I’m doing okay,” because we have noticed that a lot of people ask the question “how are you” simply as a polite formality. Sometimes, just rephrasing the question will show much more sincerity and will likely get you a more honest answer. You can try something like “has your treatment plan been effective lately” or “have you been experiencing a lot of flares” or something else just slightly more targeted and specific.
Do a little research on our disease. I don’t need you to know all the intricacies, but I will be extremely touched to know that a friend took the time to learn a bit about it. We are happy to share resources to read, but most reputable sources like disease-specific non-profits and well-known hospital systems (Mayo Clinic, Cleveland Clinic, Johns Hopkins, etc) will also have good basic info that you can find with a Google search.
Help us advocate. This is especially true if the chronic illness is a rare disease. Come to our fundraising events, our 5ks and walks, our silent auctions. Volunteer to help us plan these events or work the day of, if you have the time to spare. We know that not everyone can drop major donations for us, but just your time or presence helps us feel supported. It helps us to raise awareness, and trust me when I say this: it is so much easier to raise money or pass legislation for a disease that people are aware exists. If there is a bill in our state legislature that could drastically help us with access to treatment or other things, hear us out on it and help get the word out. If there was something in the legislature that could make your quality of life better or even one day save your life, you can bet I would return the favor in a heartbeat. We work really hard on advocacy to even get these bills put on the table, so it is exhausting when those around us don’t put forth a little effort to help us get it over the finish line.
If we have a treatment that is something other than a pill, offer to sit with us for it if you are able. I do infusions in my house every week. I find that my loved ones have a somewhat better understanding of how illness affects my life after they have witnessed an infusion. It usually prompts a lot of questions and a pretty great conversation. If your friends do any unusual therapies that don’t include a pill, it may be an enlightening experience for you to witness. Not every patient will be comfortable with having friends be there during their treatments, but the offer shows genuine interest in understanding what we experience.
There is no perfect guide book to having a chronic illness or having a loved one with a chronic illness, but any of your actions that are sincere and well-meaning will be appreciated. We just need you to keep being there for us and keep including us, especially when we are in a health rut. Friendship is ultimately a reciprocal relationship too though, so please let us know if there’s some extra care that you need in return.
Chronically yours,
Jen
I'm Just Plain Tired
Today was a tough day. I’m exhausted and overwhelmed mentally. Some days it just takes its toll on you. I haven’t been sleeping well the past few days, so I’m physically tired. I’m tired of being quarantined due to a global pandemic. I’m tired of not knowing when I can return to some semblance of my normal life. I’m tired of having to explain to people why it is important for them to wear a mask to protect people like me. I’m tired of doctor appointments and lab draws. I’m tired of having to stick myself with needles every week for infusions, even though I know how much it helps. I’m tired of losing every Monday evening to the sleepiness that comes with the infusion medication and the Benadryl I have to take with it. I’m tired of fighting the insurance coverage battle and having to convince a company that the value of my life is more than the cost of a medication. I’m tired of exorbitant co-pays and sitting on the phone for hours to get billing errors fixed on a regular basis. I’m too tired to advocate today. I’m tired of the majority of people not caring enough about my disease to help me advocate when I am exhausted and not caring enough to even learn what my disease is. I’m tired of trying to explain to them WHY they should care enough to advocate for people like me. I’m tired of people questioning if I’m really that tired when I say I’m exhausted, because I’m young and have no kids yet. I’m tired of having to explain that chronic illness tired is in fact very freaking tired when it hits. I’m tired of having to constantly fight WHILE I’M SO TIRED. My soul is exhausted.
Today I started the day with an urgent work need before I could get in a single sip of coffee, and the day went downhill from there. Today when I finished working, I drew a hot bath and just cried. It was all I had the mental energy left to do. Even though I am surrounded by people that care about me, there are some aspects of this life that are so lonely. There is loneliness in the fact that most people around you don’t spend their days like this. There is loneliness in the fact that very few people around you seem to care about how much money you have to spend EVERY. SINGLE. YEAR. in order to stay healthy. There is loneliness in the fact that you can’t take a summer vacation like your friends do, because you had to use all of your PTO on sick days.
It’s infuriating and lonely that people lose interest in helping when they find out that your disease is incurable and there is no such thing as remission for you. I’m a little ashamed to say that I get angry when people I know personally will run a race for a cause that they have no personal ties to, but they won’t show up or donate to support research for my cause. I want to scream sometimes, because the world doesn’t even know yet what gene causes my disease, but those of us with rare diseases struggle to get people we know to care enough to help with fundraising for research. We struggle to even get the hospitals that treat us to care enough to sponsor our events.
It can be a lonely journey, but you aren’t in it completely alone. While many of us are not physically near each other, there is a community of chronic and rare disease patients who care about your situation and can deeply empathize with your struggles. We must care for one another. My peace in these moments of exhaustion comes from knowing that this sick, tired group of souls keeps going despite everything else going on in their lives. Because of them, I know that it’s okay to be tired some days, just as long as I get back up and keep going. Peace also comes from the loved ones that care so fiercely about me and are there to listen when I’m tired and angry and frustrated. However, it’s also important for the rest of the world to know how tired and frustrated we are. I talk about how exhausting and defeating the regularity of the piles of paperwork and hours on the phone can be, so that maybe one by one, more people will start to care enough to help us carry this burden. I am sure that tomorrow or the next day will be a better and more joyful day, but today, I need you to know that I am just plain tired.
Chronically yours,
Jen
How to Make Vicks Shower Steamers
For my friends out there who struggle with chronic sinus issues or even just the occasional sinus infection, I just wanted to share a recipe for how to make your own shower steamers using Vicks Vaporub. These are so easy to make and so helpful when I’m feeling crummy. Think about it: you get the benefits of Vicks AND a hot steamy shower all in one. So here’s what you will need to get started:
1 cup of cornstarch
1/2 cup of baking soda
6 tablespoons of Vicks Vaporub or Baby Vicks
Ice cube tray or a candy molding tray to help you shape your steamers
Pinch of water, as desired for texture
In a bowl, thoroughly mix the cornstarch and Vicks. If you have sensitive senses, you may want to open a window, because this will smell VERY strongly. I personally love the smell of Vicks, so it doesn’t bother me but may irritate others’ senses.
Add the baking soda and mix well. Once this is done, add a pinch of water at a time only if you think you need to add a bit more moisture. Don’t add too much though, because they won’t form right if there’s too much moisture.
Shape your mixture into your ice cube tray or mold, and store in the freezer for a few hours. Remove and store in airtight containers or jars.
When you are ready to use them, just place one on the floor of your shower near the drain and let the hot shower steam carry the Vicks up to you!
The Case for Remote Work
As the pandemic has forced many of us into our homes to work for months at a time, I think it is a great time to address the long term viability of remote work, especially for chronic illness patients. The traditional workplace is an unfriendly and unflexible place for people living with some chronic conditions. This forces many patients to take jobs that are less than what they are qualified for or to file for disability or unemployment altogether.
Patients want to work. They want successful careers just like their healthy counterparts, but the obstacles that their disease presents are too often not addressed with reasonable accommodations in the workplace. Patients are afraid to tell their employers or potential employers of their condition for fear of workplace discrimination. They are terrified of having to explain why they have so many more doctors’ appointments than their coworkers, and they are terrified of being fired for needing a little extra flexibility. Many desire to work remotely in order to be more productive overall, but the availability of professional, full time remote work can be scarce.
I work in a traditional office setting, but I am in a unique position. I have been working for my family’s business for the past 5 years, and I have a boss (my dad) that has been flexible and supportive all along my chronic illness journey. If I needed to take a sick day, he understood that on those days that I was too sick to focus on my work. He understood that resting on that day would help me get well faster to be more productive overall. If I asked to work from home in lieu of the office because I wasn’t feeling well, he allowed me to do so, knowing that my word that I was working that day was enough. If I had yet another doctor to see, I was easily allowed to go to my scheduled appointments with no hassle or guilt trip for an extra hour or so away from work that day. As long as my work was getting done, I was allowed to come and go as necessary for appointments, tests, treatment, etc. During all this time, I was still the top sales producer during several of my WORST months of illness, because I was granted the flexibility that I needed to both work and take reasonable accommodations. This is NOT how the vast majority of corporate America works, and many others that needed the same accommodations as me would have been fired or disciplined for missed time in the office, regardless of how productive they are. The traditional office workplace works for me, but it is a major struggle for many others that I know.
Employers are needlessly obsessed with employees clocking in and out of a physical office, despite recent research that remote workers are actually overall MORE productive than their counterparts. A 2019 Airtasker survey looked at the work habits of over 1,000 full time employees, with roughly half of those being remote workers. They found that the remote workers were more productive and lived overall healthier lifestyles due to their more flexible work environment. Remote workers worked 1.4 more days a month than office workers, accounting for roughly 3 weeks more of work a year. They wasted less of their day commuting, leaving them more time to exercise and cook healthy meals and leading to an overall healthier workforce. They were less likely to call in sick, because if they were mildly ill or if their children were home sick from school, they could still work from the comfort of their home.
Many of our companies have turned to remote work during stay home orders due to the global coronavirus pandemic to try to keep business flowing as much as possible. In many industries, this has lead to little or no interruption in what office employees are able to accomplish at home (and that is with their kids home from school at the same time!). Offices have benefited from lower overhead costs that come with having less employees physically present without experiencing a loss in productivity. Here’s what this has taught us: the most valuable employees aren’t simply the ones who take the least amount of time away from the office. The best candidates for a job may have a disability or chronic pain or an immune deficiency. They may not be able to physically be in an office every day, but they will still do a great job from their bed or their couch, if necessary. These workers have degrees and certifications and character traits that every employer looks for. They are used to overcoming obstacles and are not daunted by difficult tasks. Their biggest negative trait to an employer is their medical condition, and they are repeatedly penalized for it, intentionally or otherwise.
The availability of more full-time remote jobs, even after normal life resumes, would benefit businesses and the workforce alike by opening up job opportunities to other qualified candidates that previously may not have even been able to apply to those same jobs if they were in the traditional workplace. I understand that not every job can be done remotely, but why not leave the option available to work remotely when possible for the right candidate? We take a chance any time we hire a new employee, so why not take a reasonable chance on a qualified, chronically ill candidate? I think that we owe it to the hardworking and driven members of the chronic illness community to try to make these kind of reasonable accommodations that will help them be some of the best employees you may ever hire.
Chronically yours,
Jen
Dante’s Tenth Circle of Hell: Prior Authorizations
If you know, you know. If you don’t, please do not stop reading. You may not yet have been affected by this form of torture by paperwork, but some day, you or your children or your grandchildren may be. I will be very honest: just the phrase “prior authorization” (PA) now makes me a little nauseated. It reminds me of Dante’s Inferno, as if PAs are my own personal 10th Circle of Hell: torture by relentless paperwork. It is one of the most cumbersome processes in the American healthcare system, and if you have a chronic or rare disease, the odds are that you have been tormented by a PA at least a time or two. If you are really lucky, this is a semi-regular occurrence.
For those of you that don’t know what a PA is, it is a process in which your doctor has decided that they need to do a certain test or prescribe a certain medication, but your insurance requires a paper pusher to decide whether the person with the medical degree and numerous years of specialized training is correct. It is as ridiculous as it sounds. Some things, like an MRI on an injured knee, will likely get approved without you knowing that this process ever really took place. Other things, like a very expensive infusion that needs to be administered on a regular basis, may take months of appeals and every ounce of your sanity to get approved.
Picture it: you are sitting in your doctor’s office right after getting diagnosed with the disease that has been rattling you for years, but hey, there’s a treatment that exists to manage your disease over time. Your doctor obviously feels that this is the best course of action for you. It’s not a cure, but cool, you want to do whatever gives you the best quality of life. You are thinking that when you agree, that means automatically that you’ll start on this treatment within a week or so…right? HA. Insert PA process here (aka the Tenth Circle of Hell).
If your treatment or surgery or whatever is very expensive (like mine is), you may get a denial the first time around after your doctor submits the PA request. If it is expensive AND a regularly recurring cost, I can almost guarantee you will have to fight a denial. You may even have to fight this process every year when it’s time to renew that prescription or every time your health insurance plan changes. I had 3 denials for just this one medication/one PA request over the course of 2 months or so, and one of those denial letters said that I should “experience a severe or life-threatening infection” before they would considering approving my infusions. Keep in mind that the whole point of the infusions is to prevent severe or life-threatening infections. My approval process required the assistance of my doctor, the specialty pharmacy, a friend who happens to be a case manager, myself, a senator, and the state’s Department of Insurance. I won’t even say that my case was an extreme example though. I just knew how to catch the attention of the right people to push things along faster when the process became unmanageable. Another friend with the same diagnosis as me fought appeals for roughly a year before getting approval for a similar line of treatment. I won’t get into all the technical details of the appeals themselves, but I will say that it was a very large source of frustration and stress, in addition to the usual stress that my disease itself was causing. It delayed my treatment, meaning more months living on antibiotics for a nagging infection that my body wasn’t able to clear on its own and more days of work missed for being ill.
BUT HERE’S THE (somewhat) GOOD NEWS ABOUT PAs:
A Government Accountability Office report in 2011 estimated that roughly 50% of denials that are appealed will eventually be overturned, especially if your appeal reaches the stage of an external review, meaning that someone outside your insurance company is reviewing your appeal. The moral of the story? The odds are (somewhat) in your favor to keep appealing. Don’t get discouraged, especially if your doctor says that this line of treatment is the true standard of care for your condition. Be sure to have a good doctor by your side, and keep a full bottle of Tylenol handy for the inevitable headaches of jumping through all the hoops.
Just don’t give up, and try to stay focused on how this will eventually benefit your overall wellness. If you get overwhelmed, find someone who can help you understand and navigate the process - a case manager, a health insurance agent, etc. Take a break from going cross-eyed while looking at paperwork when you need it, and do something that helps to ease your stress.
If you were previously unaware of the form of torture known as prior authorizations and are still reading:
I ask you to look at ways that you can help advocate for the chronic illness and rare disease community in your state and on a federal level. This is just one way that our access to care is impeded; it delays proper treatment and puts a heavy burden on patients and healthcare providers. It also disproportionately withholds care from those who lack the educational background or resources to navigate this process and understand what rights they have in an appeal. Furthermore, healthcare providers spend numerous hours of their time and their staff’s time each week filing paperwork and appeals for PAs and repeatedly trying to explain the logic and research behind their line of treatment. This takes away precious time that they could otherwise use to spend more time with patients or to engage in continuing education programs to better care for their patients.
It is very difficult to try to convince people to care about anything when they are not directly affected, but I guarantee you that a cumbersome and lengthy appeals process likely affects several people that you know personally, along with every physician/physician assistant/nurse practitioner that you see. They may not talk openly about it, but when they do, listen carefully to what they have to say. Show them you care by doing some research and finding ways to advocate for better and more streamlined prior authorization standards in your home state. Your healthcare providers will thank you for it, and your chronic illness community needs it.
Chronically yours,
Jen
Diagnosis: Grief and Acceptance
For several years, I dreamed of hearing a definitive diagnosis and getting back to my “old life.” A mystery illness had changed my life, and I saw a diagnosis as my destination. Yet, a diagnosis for me turned out to be just the very beginning of the journey, and I had no inkling of the emotional roller coaster I was about to go on.
I was only 25, and I had been holding onto the hope of feeling like my old, healthy self again. Let’s be honest: I was sick of living on antibiotics and Vick’s.
Some of you may have heard of the “Five Stages of Grief” by Elizabeth Kubler-Ross and David Kessler: Denial, Anger, Bargaining, Depression, and Acceptance. Grief expresses itself in many ways, and some people will skip stages in this grieving process or bounce back and forth between stages. Grief isn’t linear, and it never looks exactly the same on two different people. We think of the grieving process as something we do after the loss of a loved one, but in reality, I think that we go through variations of this process any time we feel a loss. After my diagnosis, I grieved for my previously healthy life, even if I couldn’t put a name to these feelings right away. Receiving a diagnosis that has no cure made me question everything about what kind of life I would live going forward. My Denial probably looked like acceptance to the outside world. When I first got diagnosed, I was (genuinely) relieved that someone could put a name to what I was experiencing, and I just kept repeating over and over again how happy I was to finally have an answer. I told people that I wasn’t afraid to take the disease head on or to start a treatment with the possibility of severe side effects. In my head, I don’t really think I was lying to anyone, but I just wasn’t allowing myself to think about it or feel anything beyond the practical steps I had to take. I made the appointments I was supposed to and focused on prepping for treatment to start.
Anger and Depression went hand in hand together for me when I finally let down the wall of my denial phase. It was a mix of fear of the unknown and being angry that this happened to me. These are the stages that really made me think hard about what I was feeling, and they forced me to put a name to it. I realized that I may very well never feel totally healthy like my old self or that I may permanently have to pace myself through the activities I wanted to do. I was angry that this diagnosis meant that I am at higher risk for developing other co-morbid conditions for the rest of my life. I worried that this higher risk of infection would complicate my ability to safely have children and if I would ever have the health and energy again to ever keep up with children. I grieved in every way possible for the loss of the future I’d always imagined for myself, and I think it is fair to say that anyone would struggle with that sudden change. I can’t tell you how many times I felt that maybe this journey would be easier if I had never been my healthy, overachiever younger self. I thought that maybe if I had never been healthy, I wouldn’t know what kind of life and health I was missing out on. Maybe that’s true, but I also realized that those kinds of thoughts would never help me move forward.
While I think some of the feelings I had during the Anger and Depression phase weren’t good for me in the long run, putting a name to it and realizing that I didn’t want to keep living in those emotions helped me see that I needed to be proactive to move forward. For me, I was only able to start moving towards my version of Acceptance when I was able to connect with other patients with similar diseases: patients in disease-related Facebook groups, a family that I met through a mutual friend, the Immune Deficiency Foundation, and another patient who was diagnosed right around the same time as me. I don’t think that a lot of these people realize how much their openness and vulnerability helped me see my future more clearly. Their experiences showed me that there is a life beyond being sick, and I found some peace through their experience.
It was also in this time frame that I remembered something that my high school Contemporary Issues teacher would repeat all the time to us: “God never gives you anything you can’t handle.” Whether you are a faithful person or not, I like to think that this phrase holds true to all of us. We are never given more than we can handle. I started repeating this phrase to myself all the time until I realized that I could either continue to wallow in self-pity, or I could use my experiences to forge an easier path forward for other patients. I needed to find a purpose. I became a co-chair for the first Walk for Primary Immunodeficiency in my state. I joined the Immune Deficiency Foundation advocacy team to put my professional insurance knowledge and experience as a patient to good use, and most recently, I started this blog to give other patients a place to feel heard and find community.
Sure, I still have to pick and choose which social events are priorities and pace myself to stay well when things get busy. My health isn’t what it once was, but following my regular treatment schedule and fueling my body with good nutrition and proper rest has allowed me to still enjoy all the best things. For 2020, I created a list of all the fun things I wanted to do in order to make the most of every day, healthy or otherwise. Some of them were as simple as finding a new show that I love to binge or trying out a new recipe at home, and some were as exciting as riding in a Mardi Gras krewe for the first time or going on a beach trip. The arrival of a global pandemic has slowed down some of these to-do items, but my list has still shown me how much I can do. There is a very sweet satisfaction every time I can cross off one of those items on my list.
I am no expert on finding your acceptance (I am still working on it every day), but if you are struggling, find someone (either in person or online) that you can connect with directly. I am generally a very private person about my emotions, and sometimes, I found that it was only my significant other who could see when I was struggling and could pull the conversation out of me to talk about it. If I could go back to give myself any advice or give advice to anyone who is struggling with a new diagnosis, it would be this: be open with someone about what you are feeling, whether that is with your loved ones or a fellow patient or a professional. Talk to someone who can be honest about the tough parts but is also a positive force around you. There are plenty of people out there that will give you pity and tell you how terrible chronic disease can be, but if you really want to make the most of the life you’ve been given, those are not your people. You only get one life, and your diagnosis can be your wake up call to savor every good moment more than you ever would have if you were perfectly healthy.
Chronically yours,
Jen
A World Turned Upside Down
Starting this blog was on my “Goals” list for 2020 since January 1. The COVID-19 pandemic came sweeping in a couple months later, thrusting an unexpected and enormous spotlight on the immunocompromised, which describes many rare or chronic disease patients. It only took a global health crisis to give me the push and inspiration I needed to start this blog, so I felt that I should dedicate my first blog post to this topic.
Since early March, my state has been urging those of us who are immunocompromised or at high risk for severe disease from COVID-19 to take some added precautions: avoid contact with sick people, wash hands constantly, wipe down commonly touched surfaces. The thing is, we didn’t need the CDC or state government to tell us how to avoid infection. Those of us with primary immunodeficiency have become accustomed to many of these measures as part of our daily lives, because each and every disease may carry a high risk for severe complications for us. This was no change to our routine. In addition to these relatively normal measures, many of us stick ourselves with needles weekly for something called immunoglobulin infusions (a type of infusion that replaces the antibodies that our bodies cannot make naturally). All of this gives us the best chance to live as normal a life as possible while living with a chronic disease.
However, we were soon told to stay at home unless ABSOLUTELY necessary to go out. We were urged to have family members or neighbors do our shopping, to work from home, to move doctors’ visits to telehealth appointments. Essentially, we became recluses overnight with no end date in sight. We were told it could be weeks or even months before being able to go out into a public space again. Some have been told that their immunocompromised kids may not even be able to return to school in the fall. I am now a little over 2 months into that journey, and this is just a super weird time for us all. If you are struggling with that, I am right here with you.
See, it wasn’t until February (6 months after starting my infusion therapy) that I finally started to feel healthy again. I had the energy to socialize with friends and exercise and do so much more...just in time for a global pandemic. COVID-19 came smashing in at a time when I was just starting to feel like myself again, and I was heartbroken. There were many tears in those first few weeks at home before (very) slowly being able to accept this “new normal.” Acceptance doesn’t necessarily mean that you are happy with it. It means that you know you will have to live with it and have decided to try to make the best of the situation.
Some days, I have the motivation to start a new blog or bake a thousand cookies from scratch. Some days, I binge watch one of my favorite shows in my pajamas on the couch all day. Balance. There are going to be ups and downs in dealing with months of self-isolation, and you are probably going to have a pretty large range of feelings. Let yourself have them, but also, try to find the things that give you some joy or excitement. That may look like a Zoom happy hour with the friends you’re missing or binge watching Netflix or going for a quiet bike ride. It might mean finding a new hobby or starting a side hustle. We all deserve moments of joy, however that looks for you, especially in the midst of a scary and unusual new normal.
Many of you may also be frustrated by the indifference that started creeping in once businesses were forced to close. Some outright said that a few thousand “high risk” lives were worth sacrificing in order to save the economy. Some kicked and screamed and stomped their little feet at the idea of wearing a mask in public to protect us. I can’t speak for you, but for me, this was a repeated gut punch every time I saw a protest on the news or a friend sharing a post. My biggest hope was that the pandemic would generate much more long-term public awareness and empathy for those who are susceptible to infection, and these sentiments, especially from people that I know, made me feel like people thought my life and well-being was somehow not that important. If this is also difficult for you, I am right here with you.
So here’s how we can continue to make the most of a crazy situation: let’s continue to share legitimate public health info, to raise awareness for those of us living with these diseases, and to try to educate those who are open to it. If you need a break from social media or the news or just certain people, don’t feel guilty. Snooze someone on Facebook for 30 days or switch out that dashboard scrolling for an episode of your favorite sitcom when you start feeling frustrated. This is uncharted territory, even for us immunocompromised folks, so just keep trying to find ways to find peace and joy in this new way of life (from a social distance).
Chronically yours,
Jen