‘You Don’t Look Sick’

Four words guaranteed to annoy me and make me feel a little bit proud at the same time. Other variants might include ‘you look well today’ or ‘you’re looking better than the last time I saw you’.

If the person has 100% good intentions then it’s easy to separate out. They genuinely are trying to be nice and it’s a compliment and I can feel proud rather than angry. I feel proud because despite how crap I’m feeling, someone has believed the charade I’m putting on that everything is fine. I don’t look sick and that was my goal. It’s sometimes hard to stop pretending everything’s fine though and turn it off, because I’ve been doing it a long time, which can cause problems

If the person is questioning my illness or insinuates they don’t believe me, or, worse, is a doctor or medic I desperately need help from but isn’t listening, comments like that come as a blow. It sets off a chain reaction of ‘they don’t believe me’ thoughts. It makes me dubious to trust them. It makes me question whether I’m just being dramatic and ‘making it up’- I never am, but if enough people tell you this over time, it’s a hard feeling to shake. Imagine if every time you said your age to someone they laughed at you and said ‘yeah right, you’re not that young’. It would give you a complex and you’d start to drive yourself crazy, despite being able to prove it quite easily. Even with friendly people with good intentions, it sometimes makes me a bit sad depending on what mood I’m in. I feel sad that I don’t feel understood, I feel isolated, sad that I have to justify myself for the billionth time and I really just want someone to ‘get it’. Those feelings multiply by 10 if the person is already scathing.

This resonates with me. I don’t know the source, someone shared it on an Addison’s Group I follow:

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The problem with having a rare illness is that doctors have limited experience with it meaning that they might have only seen a few people with it in their time as doctors. If those people are the ‘lucky’ ones whose lives carry on mostly as normal, then naturally they’re going to assume that’s the case for everyone with that illness. But that’s like saying everyone who has migraines only gets them every now and then- we know that to be untrue because enough people have them frequently to say so. If you’re not a doctor but someone who makes decisions about illness, like government officials, you might do a quick google search for info. If nothing really comes up except generic things which also say the person should be ‘fine’, then you just stick me and my illness on the reject pile. Or you look at me and decide I don’t look ‘sick enough’ therefore I’m not and I get treated with the same contempt as the real fakers.

I don’t want to look sick any more than a person wants to go out in a tracksuit every day. People wear nice clothes to create their image, why wouldn’t I create an image of my own? Being sick is not my image. Being sick is not my character. I shouldn’t have to look sick to prove my illness to anyone. So why would I content myself with looking sick if there were ways I didn’t have to?

I taught for a long time while feeling terrible. I didn’t use it as an excuse to get the kids to be nice to me and I refused to put my problems on them. So I got good at keeping my voice level and cheery even when I felt awful. I don’t like being miserable, so I laugh a lot. Even about hospitals. Especially about hospitals, even. I don’t tell people about every single symptom I have when I get them because if I did I would literally be talking all the time- I only mention it when I’m near a breaking point. I don’t like feeling awkward or like I’m ruining everything so I tend to wait until a group makes a plan and then work out what I need to do around it. I hide the physical symptoms I can and lie about the other ones to most people. I’ve got clever at how I manage myself so I can give off the air of ‘having it all together’ even on days when I really don’t (take my phone off me though, and I’m screwed).

But all that doesn’t mean I’m not feeling ill all the time. So I often get penalised for official things or by doctors because I ‘look ok and sound ok’. I’ve said it before- I managed to teach a full day with a cortisol level of 10. Some people go into comas with a level higher than that. I’m sorry I didn’t end up in a coma that day, but rather than blame me because I didn’t look sick enough and it made the doctor’s job hard, wouldn’t it be nice if someone said ‘you did a great job that day. Those kids got their education despite how terrible you felt. You were really professional. Now we’re looking after you’, and acted like a professional themselves?

It takes effort and energy and skill to not look sick. Anyone can fake being sick. People who fake being well despite illness do it because we want a life that doesn’t revolve around being sick. We want to forget for a little while. I don’t want to annoy other people. I don’t want people to worry. I feel annoyed I can’t join in with half the stuff I want to because an illness has taken a lot of stuff away, but I don’t want to feel miserable about the things I can enjoy or be part of. I don’t want to have to prove my illness to people to get the help I need because it causes me problems with my mental health, which feed back into my illness.

Lots of people fake being sick to con the system. But that’s the same as saying all people with blonde hair are thick. Don’t assume the worst in us because we ‘don’t look sick’ according to your bench mark. Some days I do give in and go out (literally) in my tracksuit, but so does everyone. If you’re one of those 100% genuine people saying it, thanks for believing my act 🙂

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