Everyone has roles and descriptions that help make up their identity, which can range from practicing a religion to being an active member of a quidditch club. I have my own, like being a major dog person, and also one that I don’t like at all: being chronically ill.
When I was 18, I developed a rare autoimmune disorder called vasculitis, which essentially means my blood vessels are inflamed. This causes fairly debilitating symptoms and affects my day-to-day life in ways that I would not wish on anyone, although the severity and the type of symptoms vary. There is a lot of misinformation and ignorance surrounding chronic illness out there, so here are five things I wish people knew about being chronically ill, from this chronically ill dog person.
1. I talk about my symptoms because I am overwhelmed, not because I want to complain.
It is not normal for a 20-year-old to have her legs go numb and have anaphylaxis-like flares, and the only non-destructive way I know of coping with this is by talking about my fears and frustrations. If I complain to you, this means I trust you, not that I see you as my therapist. I am not even looking for advice — explaining my frustrations and fears to someone else rather than keeping them all in my head is cathartic.
2. My severe fatigue is not the same as being sleep deprived.
I am tired because my symptoms, including chronic pain, make me feel like I am going to pass out, not because my sleep hygiene is terrible or I pulled an all-nighter. Yes, I consume large amounts of caffeine in order to be awake enough to finish whatever tasks that I have to do that day. No, I can’t just take a nap to feel better.
3. Telling me “at least you don’t have cancer” does not help.
I am incredibly grateful that I do not have cancer, but this does not mean that my disease is not extremely dangerous. My type of vasculitis can cause lung, liver, and kidney failure, so it’s not exactly a walk in the park. Like with a lot of patients with rare diseases, I had an extremely delayed diagnosis. I am freaked out daily by the fact that I could have gone into organ failure before I was diagnosed with vasculitis and started treatment.
4. If you offer to pray for my health, I will say thanks, but there are much more productive ways to help me.
If you are religious and believe that praying will help me, by all means, pray. But besides day-to-day tasks, I really need improved treatment and lowered healthcare costs. One thing you can do is contact your government representatives to get them to advocate for more funding for rare diseases and to fight to lower the prices of prescription drugs. Bonus points: This will help not just me, but so many people affected by chronic illness.
5. I may look healthy, but my mobility can be extremely impaired.
When I cannot feel any sensations in my legs, it is hard to stand. I have been forced to stand on public transportation — even after letting somebody know about my illness — because people do not believe that I have a disability which impedes my mobility. While I understand there is a large chance there were at least a few people with invisible disabilities who were sitting, I have a hard time believing not one person on an entire bus was not capable of giving me their seat.
It is hard to understand how a chronic illness can affect someone’s life until you or someone close to you has one, so hopefully these five things can offer some insight. Now excuse me while I Facetime my dog.
Header image via Rebecca Hendin on giphy.