It feels like an absolute minefield having an invisible disability. At first I didn’t much care how people might view me. I’d never been very bothered about anyone’s opinions on my quirks, at least not since being a teenager. So when I had to start making adaptions to my life to not be in hellish pain and deathly exhaustion all of the time, I did, and anyone who found it odd could think whatever they wished. Not anymore though. Now I’m more ill, receiving disability benefits because I’m too ill to work (any offers of work that involve the equivalent of writing a blog post per month, in small segments, are most welcome via the contact page!). And every day I feel like people are thinking I’m faking it, and might even report me to the Department of Work and Pensions.
The black and white ‘can or can’t you?’ perspective
People generally see disability in very black and white perspectives, with no shades of grey. I wrote more on this in a previous post so I’m not going to go on about it here, but basically people do not expect wheelchair users to get up, even though many use a wheelchair because they can’t walk all the time or walking too far brings on a lot of pain and exhaustion that goes way beyond how a normal person feels after going for a hike. This can also be called the ‘can you or can’t you?’ perspective. Can you walk, or can’t you? Can you get out of bed, or can’t you? Society finds it relatively easy to understand people who find it physically impossible or extremely difficult to do something, such as climb up some steps, or cut up food; people who can’t lift their arms or legs into usual positions, or look extremely unsteady. It hasn’t really yet got its head around people who can sometimes do those things fine, and other times struggle, or who can do things, but will be exhausted or in agony for the rest of the day.
Why do people struggle to understand invisible illness?
I think in many ways it’s just part of our collective consciousness. It’s easier to compute when someone clearly can’t do something than when they say it’s a problem for them. And, unfortunately, our collective consciousness is also very much on the alert for benefit cheats. When I see someone get up from a wheelchair and walk, I think it too, even though I do that too! I immediately challenge the assumption, but it was there. I think this comes from:
- The media obsession with benefit cheats
- A very British grin-and-bear-it attitude where self-care is not viewed as positively as forcing through pain and exhaustion
- The dissatisfaction many of us have with our jobs and envy of anyone who might not have to work, especially if we think they might not really be that disabled
- The undeniable existence of laziness and the fact that some people might just want a blue badge for selfish reasons, for example, but I think these people are quite rare. But as we’ve all experienced laziness on occasion, some more than others, maybe it’s easier for a fairly healthy person to imagine laziness than chronic illness?
You know when you feel the security guard is watching you, and suddenly you feel really shifty? It’s a lot like that. I feel like I’m tying myself in knots sometimes. Having grown aware of the black and white mentality about disability, I sometimes do things to signal my invisible disability, such as walking with a stick. I don’t really need the stick, but it signals to people in a visual way that I have a mobility issue. In the past, people often walked far too fast, or never gave up a seat for me when I needed it, or even asked me to vacate my seat, or made comments about it being lazy to use the lift. I suppose I could have gone into long conversations about my invisible condition, but the stick is a shorthand, and prevents these awkward conversations. On the other hand, some people might see that I don’t massively need it, and it must be very odd to my housemates that I only use it to go out.
I’m not a fraud – I genuinely get extreme levels of pain from walking, which keep me up at night and leave me exhausted the next day. I do need to manage how much walking I do in order for me not to turn into a zombie – a pained, irritable, mindless zombie. But people expect those with mobility problems to walk like a very old person might walk: laboriously, unsteadily, looking agonized. Some people end up putting that on, because it’s what people expect, and you’re much less likely to be believed worthy of disability benefits or a blue badge if you walk completely normally and they just have to take your word for it that you do need to manage how much you walk. I usually get my GP and friends to write letters about how my disability affects me and even to mention the fact it’s an invisible illness in order to prepare people assessing me.
I’d love to hear your thoughts and experiences on this! Comment below! Also keep a lookout for Part 2: coming soon. Take care! x