I’ve been thinking a lot about my chronic illness and how other people react to it and the false assumptions they make. So I thought I’d write about some of the more common ones.
Don’t assume you know why we do the things we do. Ask us for our reasons:
A lot of us have lived with chronic illness for a long time and have developed coping mechanisms that might seem strange to you. But before you judge us, ask us why we do the things we do. For example, staying up really late watching YouTube may be helping to distract us from our pain. Or sitting in a dark room all day with the curtains closed may be because the light hurts our eyes.
Don’t assume you know better than us.
This is similar to the previous point. If we ask for a certain thing, don’t give us something you think will suit us better. Most of us have thoroughly researched what we need and what will suit us the best. By all means make suggestions, but the final decision should be ours.
Don’t assume we don’t care about tidiness or how things look.
Just because we may live in a mess or be scruffy, don’t assume that it’s a choice or that we don’t care. There’s a big difference between not caring about something and caring but being unable to do anything about it. Maybe offer to help us with housework or brushing our hair etc. Ask us what the issues are and brainstorm solutions with us.
Don’t assume we’re not tired or in pain. Even if we don’t mention it.
Like a lot of people with chronic illnesses, I’m always in pain. From the second I wake up to when I fall asleep. The exact nature of the pain may change but the pain itself is constant. But I realise that going on about the pain I’m in can get tiresome so I try not to mention it. Same with the fatigue. It doesn’t mean I’m not experiencing it.
Don’t assume we don’t want to go out or join you at events.
A bit like the housework one, just because we can’t always make it out of the house doesn’t mean we don’t want to. So please, keep inviting us out, even if we end up having to cancel at short notice.
Don’t assume we can’t hear you.
Most of us aren’t deaf, so we can hear you muttering about us under your breath. If you’re going to bitch about us, please do so internally or at least not within earshot!