I feel that after 18+ years of chronic illnesses I am forced to mask in most aspects of life. It’s exhausting to pretend like I am not having symptoms for the comfort of the people around me who are not chronically ill or disabled. They don’t understand anything and they genuinely don’t seem interested in learning either. I’ve been chronically ill since I was 18, so I’ve always been “too young” or told “it’s just a virus, it will go away” to dismiss how sick I really am. Bad enough to get dismissed by doctors - I trusted them blindly when I was that young and didn’t realize I was even being dismissed and mistreated - but to have been dismissed by almost everyone else just…sucked. Fortunately, my husband (who was my boyfriend at the beginning of my journey) is a true supporter. He always tries to find ways to help me and never judges me or makes me feel bad for needing extra rest or cancelling plans. I don’t have a lot of friends, because, well, as many of you know and experienced, when you’re chronically ill some friends sort of disappear on you. I tried staying in touch and got so sad when I realized I was the only one reaching out, just to check in. So I stopped. My energy is very limited as it is and it’s crushing to put that effort into one-sided friendships. I mean, is it really unreasonable of me to wish I got a text, maybe once a month or every couple of months, just to say hi and see how we are doing? Anyway…after a pandemic and having health issues keep me at home for quite some time, I am building up my endurance (or at least trying to). So my socializing is limited to colleagues and in-laws. I work from home so I try to limit my interactions as much as I can. Fortunately, most of these interactions are work-related so I don’t have to defend my condition to anyone. At most I’m pretending to not feel like crap. With my in-laws it is so much harder. I am on a medically necessary gluten free and dairy free diet. Every get together revolves around food so I always have to bring my own. Although they insist on hosting (they have a bigger space), I always bring my own food. But gluten is everywhere. They always make comments about what I should be doing, without even knowing anything about my conditions. They tell me they “pray” that my conditions will go away and comment on my appearance. And you can’t educate them because they literally do not have capacity to listen and learn. I’ve tried and so had my husband. They’re just convinced they are right and I must be doing something wrong if I am still not “better.” My husband is really good at ignoring it all. He accepts that they are don’t have the tools to do better - he gets through the visit, we leave and he moves on. Unfortunately, I hold onto it longer because after so long, I just want to tell them off. I know this isn’t the right thing to do and if I am going to support my husband and show up for him, like he always does for me, I have to find a way to deal with them. It’s just really hard.
I just want to be myself, without being lectured. I don’t want to have to perform and pretend I’m not having symptoms because everyone else is too fragile to handle it. Doing all that extra work for everyone else’s comfort drains the little energy I have and I might have more to spare if I could just not be pushing on to survive these interactions.
How do you stay true to yourself and manage these trickier interactions? How do you accept that the people you would like to care just can’t show up in the way you would like them to? At what point does it go from giving them grace to enabling poor behavior?
Thank you for giving me a safe space to share.