The world of invisible disabilities is damn hard place to live in.
Aside from being fraught with all the usual problems people with visible disabilities face, we have added issues that often centre on a lack of understanding and societal disbelief towards illness that can’t be seen.
I’m sure you have your own list of frequently faced misconceptions. I totally get the reluctance sometimes, what gets me is the boldness that some people have when telling me about my life with chronic illness. Here’s my list of common (and annoying – I’d be lying if I didn’t admit it’s annoying) misconceptions about invisible disabilities.
You look fine, you can’t be that ill
Really? Because you were there this morning while I was downing my powerful cocktail of prescription medication just so that I can have some quality of life. You might have also forgotten the part where the disability is ‘invisible,’ i.e you can’t see it. Many people with hidden disabilities look well on the outside. It shouldn’t, but for many people this discredits us. I’ve been in environments where because I looked well, no one asked how I was feeling even though it was known I had been hospital twice in a month, while my cohorts with the common cold received expressions of concern.
“It’s hard Alisha, it’s because you look totally fine on the outside” my friend explained. I get it. I still hate it though
You’re just lazy, pitying yourself or seeking attention
You totally got me there. I’m naturally a lazy narcissistic bum…Just kidding, sorry. Invisible disabilities affect patients just as visible disabilities do – impairing our abilities to function daily. But actually, in many ways it’s harder for us, because we are judged so harshly, many people with invisible disabilities push their bodies to the limits to try to function normally. But there’s nothing normal about our situations and consequently, our health suffers from trying to function normally. People with hidden disabilities are some of the most independent people you will ever meet. I for instance, work full time, not because it’s easy- it’s damn hard and every day is a struggle but it’s my bread and butter and if I don’t roll my derriere off the bed or crawl to the bathroom in the morning, I won’t have shelter or food at the end of the month. Also, could you imagine having to depend on people or a society that believes these unkind things about you? We don’t want to deal the onslaught of negativity from people who don’t believe we are actually unwell. That’s the cost of judging people with hidden disabilities.
Positive thinking will wish away your ‘illness’
We wouldn’t say this to a cancer victim or to someone with a broken arm, so why say it to someone with an invisible disability? I have written before of the doctor who told me to “be grateful that you’re not dying of cancer.” A lot of people still believe hidden disabilities are mind over matter, not real, all in the head, and so, able of being poofed away with the power of positive thinking. There is value in positive thinking, but sadly, it cannot cure invisible illnesses. The irony behind this argument is that, for conditions like fibromyalgia or mental health conditions, a lot of the symptoms stem from issues in the brain – our pain receptors not working properly, a lack of certain chemicals that cause sleeping problems, low mood and cognitive impairments etc. So yeah, it might have something to do with the brain, but the problem isn’t positive thinking.
You’re faking it
Do our doctors tell us we’re faking it when we’ve got a painful earache? A migraine or God-forbid, a fiery bladder infection? All because they can’t see it? Then why do we accept it as ok to question someone’s disability status just because they’re not toting a crutch? The National Union of Journalists Disabled Members Council did some work on hidden disabilities and how their presentation (or not) in the press affects us. They found that people with hidden disabilities are often overlooked and sometimes demeaned. This makes me so sad.
Exercise will make it all better!
There is value in this too. Exercise we know, releases endorphins that help to lift our moods in the case of depression for instance. But in fibromyalgia and some other chronic pain conditions it can be tricky. It can in fact have the opposite effect on fibromyalgia patients – and when I’d just been diagnosed, I spent many days flat in bed after feeling guilty post suggestions from my ex partner and friends on just needing to try harder with exercise. I went jogging, and joined a gym, and struggled immensely as you would if chronic fatigue plagues you along with pain. I often couldn’t walk for days and my limbs would swell in protest. Thankfully, I met a sensible doctor who explained that we need graded exercise, or something like swimming where the impact on our muscles is less. But no, doing the kind of exercise that a healthy person does won’t work. Nowadays, when people tell me ‘you should join a gym, you’ll feel better,’ I just nod enthusiastically with occasional ‘mmhmmms’ and leave it at that.
We won’t get past misconceptions about invisible disabilities until we start having discourse with an open mind. The National Health Service (NHS) in the UK are calling us expert patients, and with good reason. They recognise that patients are experts in their own right, after all we’re the ones living with the conditions, and while difficult, it’s a learning process for us too. Most of what I’ve learnt about fibromyalgia has been through experience and sharing with other patient – at the time of my diagnosis there was a dearth of information on it. If the NHS can recognise that, it’s about time society starts treating us with respect too. Don’t just impose what you think when you hardly understand what we’re living every day. I’ve previously explained the myriad of problems constant judgement and discrimination causes for us. Listening to what we have to say with an open mind is the beginning of the road to understanding invisible disabilities.