Visibility, invisibility: two sides of the disability coin… now you don’t

Erin Stewart on the judgements and misjudgements people make about those living with conditions which are not visibly apparent.

Sometimes you can note the shadows and sadness behind the eyes of a person with depression, or the wringing, agitated hands of someone with anxiety, but there is no sure sign. Mental illnesses have no physical markers. You can’t see it; you can’t find it in a blood test or through medical imaging. Objective tests are in development, but the evidence of mental illness will always be evasive.

Which means that sometimes the person who is ill can’t see their condition for what it is. It’s hard to admit you need help. It’s hard to stand against stigma. It’s hardest of all to see your experiences as significant or unusual if you have no external barometer.

I had always taken an interest in psychology and roughly knew what a range of different disorders were, but it took a long time for me to identify with any of them. It’s one thing to be aware of what mental illnesses are and their symptomatic profiles, it’s something else to be able to take that nebulous information and put them in the context of your life.

Even though mental illnesses are diagnosed by doctors in clinical settings, a diagnosis can’t be taken on board until the person themselves feels able to relate to it. There is no way to be sure, so saying the words, “I have a mental illness” is actually an enormous step in asserting that you are going through something tough. It takes a lot of courage to believe your own thinking that you deserve support despite no physical evidence confirming this conviction. It is the hardest thing I have ever done.

Unfortunately, it’s something I’ve had to do over and over. There have been times where I’ve really struggled and sought support only to be answered with invalidation. Sometimes this has happened in my social circle. Sometimes, most devastatingly, the content of my inner life has been denied by people who are employed to help people like me. Those people cannot see what I am feeling, and they don’t know how to trust me when I’m giving voice to invisible things.

When I was newly diagnosed with bipolar disorder, I talked to a friend about the difficulties I had been having with my mood and the struggle to keep up with my work. She made a few sympathetic noises before saying, “That’s nothing” and listing her struggles over the years, mentioning that despite her difficulties she still managed to get through her studies without problem. I felt shame.

When I told a few adults in my life how tired I was, how I wasn’t sure if I could still go on, they said to me, “Everybody’s tired.” I was to stop complaining, exercise more, “Suck it up.” I learned they couldn’t listen to my words, assuming that my experiences were no different from theirs. So I stopped telling them anything of importance.

Another time, I went to a clinic for a referral. It was just after New Year so no clinicians I knew were in their office, and I had started getting disturbing side-effects from my medication. I told the clinic nurse in the even tone of voice I’ve cultivated in order to ‘pass’ as someone who is well, that I was in need of help right away. “You look fine to me,” she said. My symptoms got even worse before I could find a different service and it took months before I felt back to normal again.

At a different clinic, a receptionist once admired my engagement ring. “Why are you here?” she asked me, with genuine curiosity. “You have a good life.”

Mental illnesses aren’t the only invisible illnesses. There are lots of disorders that affect individuals every day that others just can’t see. With depleted energy and a great deal of pain, the invisibly ill carry the burden of contusions that cannot be recognised.

I’ve often been struck by the jarring differences by the way my life might look to someone external and the way I feel. I’ve been lucky in many senses, things have lined up well for me, I enjoy the work I do, I have social supports and material comfort. I’ve spent too much time flagellating myself because I’ve not always been able to enjoy it.

I know that it isn’t easy to trust reports of a difficult internal life with what looks like a fabulous external life. We wonder about rich and famous people who seemingly ‘have it all’ before they take their own life; occasionally when someone admits to having a problem we realise that we didn’t have so much as an inkling that something was awry.

The inability to see invisible illness is unavoidable, but what we can do, and do much better, is listen to someone who says they’re having trouble. If there is doubt, give them the benefit of the doubt. If they look okay as they tell you about their pain, know that many of us with invisible illness spend our whole lives trying to look like we’re okay.



2 thoughts on “Visibility, invisibility: two sides of the disability coin… now you don’t

  1. It’s hard enough to find the courage to ask for help. The least people can do (friends or professionals) is acknowledge that you’re asking and that you’re asking for a reason. It’s a shame that professionals judged you on your physical appearance.

    I bumped into an acquaintance today and explained that I was currently attending a course of talking therapy following a few difficult months of pain and depression. He remarked that I looked so well. I made a joke comparing myself to a functioning alcoholic of all things! I guess a simple ‘Thank You’ would have been better 😀


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