We shouldn’t feel guilt of things that are out of our control, but I don’t know anyone who’s dealt with a chronic illness that doesn’t ever feel guilty.
I mostly feel guilty that my parents spend so much time taking me to doctor, especially my mom, and that they have spent so much money on medical treatments. They never try to purposefully make me feel bad, but I know this is hard for them too. They didn’t ask for this anymore than I did.
For almost all of my doctors appointments my mom’s been there. It’s not that my Dad doesn’t care, his work just isn’t nearly as flexible. She’s spent countless hours in doctor’s offices, ER’s, and hospital rooms. She’s advocated endlessly for me, even when she was tired or not feeling well herself. I am so grateful for her, but I also feel terrible that she’s sacrificed so much for me.
The money is a different issue. We’ve always been very fortunate to be middle class. During the five years I’ve been chronically ill my dad was laid off and then unemployed for a little over a year. Luckily he got a pretty good severance deal from his previous employer but it was still really hard on our family financially and emotionally. My illness did not stop just because he lost his job, and paying tens of thousands of dollars in medical bills took a blow to our finances. While we’ve also been very fortunate to have always had medial insurance, the cost of doctors office visits, medications, and diagnostic testing really adds up. Knowing that even if I have a job that pays really well in the future, I will never be able to repay them is a hard pill to swallow. I see that every time they check the mail there’s another medical bill that’s usually for me, and it makes me feel incredibly guilty.
Another thing that makes me feel guilty is seeing my parents get upset when I’m not feeling well. Sometimes I try lying and say I’m feeling okay, but they can usually see right through me; I’m not a very good liar. At times I forget that this is really hard for them emotionally as well. They are nearly as frustrated as me that I don’t have a diagnosis or an accurate treatment plan. Their heart breaks along with mine when we hear another doctor tell us they don’t know what’s going on or another medication doesn’t work. I wish I could take all of their pain away, and knowing I can’t is the hardest part.
I know that feeling guilty won’t fix the situation or make it any better, but seeing your issues affecting someone else is difficult. I hope that if you feel guilty about being chronically ill that you can see that it isn’t your fault. Chronic illness is a beast that no one causes.