An illness which is ‘invisible’: a blessing and a curse

March 2, 2014 § Leave a comment

Having an illness which is not particularly noticeable to those around me is both a blessing and a curse. I am always appreciative that even when I feel awful, people often don’t notice. I can use makeup to hide the tired bags under my eyes. I can wear baggy clothing to hide swollen joints. Even painting a fake smile on my face tricks those who don’t know me well. People close to me, however, can see through this. They notice when I’m in more pain my movements are more limited and guarded. They can tell I’m distant and distracted from their conversations because I’m trying to cope with symptoms. If I take my strongest painkillers then it’s quite clear I’m feeling ‘spaced out’! My temper is also much shorter when my pain is higher. Even side effects of medications cause things like foot rashes, the bruises from blood tests and other results of treatments can make me stand out.

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One of my wrist braces, perfect for sleeping or driving

I’m often able to stay within my comfort zone and blend into the ranks of ‘normal’ people going about their lives. But when does it become less of a habit and more of an anxiety? The reason I feel uncomfortable about wearing my joint braces in public is simply due to the reaction of strangers. When I wear my wrist braces or in the past was on crutches, I get quizzical looks from people and, surprisingly, strangers will actually ask me about them. To them, it may just seem like friendly curiosity, but to me it’s rude and prying! From my searches online, it seems like this is not a rare consequence of using visible aids, particularly for younger people who otherwise look perfectly healthy. People who use braces, canes, wheelchairs, or even who need to sit on journeys have to frequently ignore staring and navigate inquisitive individuals.

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Foot rash (easily covered with shoes, until the hot summer!)

For a long time I used to just rant about my experiences, avoid wearing any braces and make an effort with my appearance if I had to go out. Only recently have I realised that it’s quite an unhealthy and short-sighted reaction. Rheumatoid arthritis is a progressive disease and eventually it will not be an ‘invisible illness’. Having this condition has taught me that self-care has to be my number one priority and I have to see using aids like braces and walking aids as another extension of self-care. Why should I cause myself more pain by not wearing joint braces, just to save myself the discomfort of being asked about them? Why should I expend more energy getting ready to go out just to look healthier, when it’s rare I have enough energy anyway? It is entirely in my rights not to answer questions from strangers, or if I feel I want to, I can use it as an opportunity to educate them about my condition and other invisible illnesses.

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A bruise from a blood test

I feel I am saving others the embarrassment of talking about it or wondering why I need braces and so on, but I actually don’t owe these strangers anything. It may sound harsh the way I am describing people, and they may well be friendly and wanting to help or just wondering why I’m wearing something when I look otherwise healthy. They may think I have an interesting or funny story of a recent injury. But I live with this condition every day and sometimes I like to push it out of my mind as much as possible. I do not have to be everyone’s teacher about my condition and I don’t have to answer them to save their discomfort.

So these ways to cope, reduce pain or consequences of tests and treatment, though they break the illusion of ‘health’, don’t reduce my rights as a person. It’s my choice to use the aids and it’s my choice to disclose why. I shouldn’t decide whether to use them based on how others may feel or react to them, I should simply use them because I need them and not feel anxious about it.

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