Wednesday, 17 September 2014

Can we End the Awkward with invisible illness?


Scope ran a great disability awareness campaign recently called End the Awkward. It poked gentle fun at the cringe-making faux pas made by some people in response to other people who look or behave differently.

So what about those of us who are disabled but don’t look different? The good thing about an invisible illness like mine, you might think, is that it gives me a "normality cloak" to hide under and protect myself from the hurt or embarrassment that can arise from people's ignorance or  preconceptions towards difference. By controlling if and when I disclose my disabled identity I can avoid such Awkward Moments as people not knowing how or whether to shake hands with me if I don't have a right arm, for example.

It's true that the normality cloak gives me more control. But the danger with wearing that cloak all the time is that it can turn me invisible too.

I have all kinds of difficulties and needs you can't see at a glance and if I want to exist in the world as opposed to in my own shell I need to elicit a degree of understanding and co-operation from other people that one doesn’t normally expect from strangers. That entails shedding my cloak and "coming out" as Disabled.

For example, I can’t stand up or walk for more than five or ten minutes. I constantly need to sit down but I still wish you to include me in the conversation. There’s a high chance I’ll have to cancel any commitment at short notice due to a flare up in my condition. I need you to not see that unreliability as a blot on my character. I have to go off and have quiet naps all the time. I’ve yet to come across accessibility provisions for venues or events that include a quiet place to lie down. I can’t tolerate background noise, bright light, alcohol. I fear you'll think I'm a party pooper. Sometimes I’m too brain-fogged to answer a simple question. I worry you'll find me conversationally pointless.

Incidentally, there's also the plain fact that I often feel very unwell. It’s hard, even for me, to get over the deep-seated social taboo that being ill, like having sex or picking your nose, is something that should be done in private.

However, when I do come out of my normality cloak, I too face The Awkward. The stock response I get is:

“But you don’t look sick!”

People usually think they’re paying me a compliment. But to me, that phrase opens a whole wriggling can of Awkward worms. It tells me you are disconcerted by my lack of evidence. Am I genuinely disabled, or am I pretending so that I can get a seat on the bus, get out of a chore, or just someone who craves special attention? You might think I'm being paranoid but influential professionals have built their careers on the assertion that people like me are on a spectrum of social deviance, feigning disability more or less consciously for secondary gain. And in Austerity Britain there’s an added twist to my revelation: am I one of the legendary “benefit cheats” you may have read about in the papers? 

Sometimes our own close friends and family can’t bridge the gap between us looking normal and being quite severely disabled. So coming out as Disabled to strangers can feel like placing oneself under suspicion of fraud: too raw, and too risky.

Some severely ill people don’t have the physical capacity to leave their home and face The Awkward at all. But quite a few of us who could get out for a few hours a week end up staying indoors because shedding that normality cloak and risking other people's judgement of our character and credibility is too emotionally fraught. And in avoiding the Awkward we end up alone, left out, invisible.

So how can you help to End the Awkward with invisible illness?

The way to include a person with invisible illness is the same as with any disability: see the person, not the condition; ask what help they need, don't assume you know best; be as flexible and open-minded as you can. Only for us there's an extra plea that foreshadows all the rest. In the words of @theslowlane_ME if I tell you I can't do something

“Believe me. Please. Just believe me.” 




3 comments:

  1. I don't agree with 'see the person, not the condition'. Rather I would acknowledge the person and their condition, and go from there. My illness is a part of me whether I like it or not, and informs most if not all of my interaction with the world in general. If I disclose, I've done it for a reason. I would like to think the person I've disclosed to takes my illness into account and continue to treat me as they would have pre disclosure. Of course that may or may not ever happen, but that is how I would like to think I would interact with anyone who disclosed to me.

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  2. I get where you're coming from. My reason for saying that is that sometimes I need to disclose my condition for practical reasons but that doesn't mean I then want to have a whole conversation around How long?/Have I tried taking aloe vera? etc etc. It makes me feel reduced to my diagnosis. Thanks for commenting

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  3. Even those of us whose condition is more visible get the constant "have you tried reiki, aloe vera, acupuncture..." etc etc etc - esp if we confess to having chronic pain. Answer (if we dare) - do you not think that after 20+ years we'd have tried most things?! Grrrrrrrrrrrrrr!!

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