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
