By Jack Croxall

One of the hardest things about having an invisible illness is hearing the same upsetting things said to you time and time again. I have chronic fatigue syndrome (CFS) but, through chatting with people suffering from various invisible illnesses, I’ve learned that, sadly, this struggle is far from unique to me. We all hear the same problematic stuff all the time and it really does (quite literally) just add insult to injury. However, after seven years I have discovered some helpful, tension-alleviating responses that I thought I’d share here. I’ll probably be sharing the slightly less diplomatic thoughts that go through my head at times as well, so be warned going forward!

“But you don’t look ill”

Let’s start with the big one. Now, I understand that sometimes people are saying versions of this in a nice way. They might be saying that you look good despite being ill as a kind of positive, uplifting compliment. I’m not talking about such people. I’m talking about the people who use “But you don’t look ill” as a means to thinly veil an accusation, the accusation that you look fine on the outside so maybe you’re just putting this illness act on.

This is where I just want to scream “How dare you!” and launch into a big arm-waving, expletive-fueled fury. But, usually, I don’t have the energy for that and, much more importantly, I know it wouldn’t help matters much if I did. Instead, I try to use such situations as an opportunity to educate: “Yes,” I say, “that’s part of the problem. CFS sufferers are only seen out and about on good days. The worst of what we go through is hidden from wider society. It’s cited as one of the reasons why research funding is so low; the problem isn’t visible enough.’

“I wish I could stay at home and watch TV all day, some of us have to work”

Wow. Just thinking about all the people who’ve said this to me makes me want to pack up and move to Mars. Obviously, such comments are often inaccurate (I can’t watch more than an hour of TV a day because of brain fog) but, even for cases where TV days are the norm, well, I’m going to say it again. How dare you. People with an invisible illness are often housebound or even bed-bound. I was housebound for my first two years and it’s like a prison sentence. Being able to work, to have a career and a steady income, that’s a privilege. One that has been cruelly taken away from so many of us.

Now, I’m lucky in that I can write a bit and so I work from home doing that, but I still desperately miss being out in the world. I miss being free to explore and I long for all the experiences that a healthy version of me would be having. “Be careful what you wish for.” That’s what I’ve found is best to reply with. Mainly because very, very occasionally, I see it sink in. I see the culprit start to second guess what they’ve just said. And if you can persuade even a single person to challenge their own problematic opinions, that is a very good thing.

“Can’t you just man up?”

Sigh. I got this a lot from members of my own sex back when I was first struck down and no one could understand why I wasn’t going back to university. I was also surprised to find out that women get versions of this too. Obviously, I can’t report from personal experience on the female perspective, but I hear that: “Stop being a hysterical woman and get on with it” is the kind of drivel gals often have to suffer. But, whatever form the hysteria/man up sentiment comes in, it is incredibly damaging. I encountered it so much when I was first ill that I tried to listen and act accordingly. I tried to work through what was happening to my body and I made it ten times worse as a result. Ultimately, dealing with the hysteria/man up slur is tricky. Before I got my diagnosis I found that no one was interested in how tired I was (“We’re all tired”). Equally, few cared how much pain I was in (“Just take a painkiller and get on with it”). However, other symptoms, nausea and body tremors for example, seemed to elicit at least something resembling the compassionate response ill/scared people need. I found that many people (including some medical professionals!) think that you can work through extreme tiredness and pain, but were less condemning when I reported other symptoms. Not at all how things should be, but worth knowing nonetheless.

“It’s so rude that you just lie down whenever we see you”

This is a weird one. I’ve found it’s less common than the other examples above, but I still find it really upsetting. For me, leaving the house on any excursion is a huge deal. I seriously struggle to sit upright or stand for more than a couple of hours and, really, I need to lie down perfectly flat every hour or so otherwise it’s pain and fatigue and everything else that goes with it for me. All this means that I can go out and see people, but, wherever I am when I start to lose altitude, I need to lie down and take a break. Seriously, I’ll just lie down wherever I am; carpet, grass, even with the dog in his bed. And I’ve gotten used to people finding it odd. However, if I explain why it’s necessary I’ve found that most people are super-understanding; “Not a problem! Why don’t you use my room?” etc. But not everyone. When people take offense I generally just ignore them. In this situation, with your body starting to falter, you need to concentrate on regaining energy, not on getting into a war of words. It’s as simple as that.

So, that’s my experience and that’s how I’ve learned to cope with this stuff. I should probably say that it’s really only the minority of people who offend, however. I’m lucky in that most people around me “get it” and are incredibly supportive. But, outside my house, I usually won’t go too long without encountering some nasty slight. But what about you? What are your experiences and how do you deal with this stuff? Please let me know in the comments section or on Twitter.

Jack Croxall is an author/blogger living in Nottinghamshire, UK. He posts for AlliesEverywhere monthly.

Books: https://www.amazon.com/Jack-Croxall/e/B00BBX48NK

Site/blog: http://jackcroxall.co.uk

Twitter: https://twitter.com/JackCroxall

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