Friday, July 18, 2014

People Are Assholes - The Chronically Ill Perspective

I don’t like to lie to people. I also generally don’t like to make people uncomfortable, unless it is productive in some way. I am sure getting feedback from me on writing is uncomfortable for people sometimes but that is okay because no one gets feedback unless they have come to me and asked for it.

Often not lying and not making people uncomfortable are at odds. Particularly when it comes to my health issues.

This article is not about writing. It’s about chronic illness. Feel free to pass on the rest of the article and come back next week for more writing talk.

I don’t tell people I am ill unless it comes up. In most cases it would be easiest and most comfortable for the people I am talking to for me to lie. However I do not like lying. It makes me uncomfortable. I do not feel that I should be made to hide my condition for the sake of other people’s happiness.

Usually when people ask what I do, I say I am an author—which is a half truth and usually interesting enough that people focus on that. However when pressed with more direct questions I will always offer the full truth:

“I am chronically ill. I spend much of my time too unwell to leave the house. There is a high chance I will relapse. There is a high chance that relapse will kill me. That could happen tomorrow. Or never. Either way, I am never going to get better.”

That’s the truth. Mostly, when people hear it from me, they hear it in the form of a joke. I turn all the pain and misery into a zany story and I encourage people to laugh with me. “My skin rotted off! Can I top that? What new and exciting symptom will I have this week? Stay tuned, to find out!”

This is good for everyone. It’s good for me, because turning it into a game is what keeps me alive. It’s good for other people, because it lets them ask questions without feeling like they have to act sad or comfort me and it tells them how to behave (laugh) in a situation they are unfamiliar with (self deprecating, terminally ill people).

That said, as much as possible I omit the truth and the longer I can hide the fact I am a rotting sag of barely functioning organs, the better.

So on Saturday, I was too ill to go to the Abbey Festival. Someone asked what I was doing that day and I expressed that my plans had been changed due to illness. They encouraged me to go anyway and I said that I would if I could, but I was unable.

Cue a rant about their terminally ill relative, who still got out and tried to do things, even though they were sick.

Firstly, I genuinely hope it’s true and that their bedridden, reliant on morphine relative does get out and do stuff. Because that’s awesome and in the chronic illness community, you learnt to celebrate each other’s victories.

However I wonder if that same relative knows someone is using their illness to bully other people? I am guessing no.

When I explained that I too was chronically ill and that much like their relative, I did do stuff when I can, but there was a lot of days when that was not possible, they said I had no right to be annoyed, as I had not told them about my condition.

The thing is, if my ‘healthy’ friends cancel on me because I have a cold, I don’t say: “Oh boo, you whore. I’m an animated corpse. Suck it up, princess.”

When it comes to chronic illness, there are five things I would like to drill into people:

1. It’s not a competition. No one ‘wins’ by being sicker. Trust me, if I could lose that competition, I would.

2. No one has a right to judge anyone else’s health. Not even doctors.  Doctors should diagnose and treat. There is a special place in hell for judgemental doctors.

3. We should empathise with each other. We should not try and lord our superiority over each other. Also, nothing about being sick makes you superior. Suffering does not make you superior. Having to have someone else pour milk into your cereal because your hands are shaking does not make you a goddamn martyr. It’s sucky. I’m sorry it’s sucky, no one should treat you like less of a person because your life sucks, but You. Are Not. Better. Than. Anyone. Okay?

4. Carers are the best people ever and should be treated like celebrities. However if you use someone else’s illness as an excuse for your bad behaviour, you’re still a dickhead.

5. You don’t have a right to know anything about anyone else’s health. When people ask me I am happy to tell them because SJS is rare and I am all for people understanding and learning. But I don’t have to tell people I’m sick. If you look like an asshole because you didn’t know, that’s on you, not me.

Hopefully this cleared up any confusion you might have had about being a complete shithat around people who are chronically ill, or not chronically ill, but who are still alive and have basic human rights and feelings.

Postscript: If you ask me how I’m feeling, and I say ‘good’ what I really mean is: ‘I’m in agony, but something interesting happened’.

Alternatively, I am lying because I don’t like you enough to have a conversation about it.


  1. Kage sent this article to me and I'm glad that she did.

    Your friend bullying you really upset me. Luckily, most of the people around me are really understanding of my illness and limitations but I have been told a few times that because I'm not in a wheelchair, I must be fine. The only reason that I don't work a normal, full-time job outside the home is because I'm lazy, not because I'm ill. I'm not actively lying in a hospital bed and dying, so I must be healthy. It's nearly impossible to make some people understand chronic illness.

    1. While SJS is on the ‘extremely unpleasant’ end of diseases one can have, in some ways I have it easier than other chronically ill people because I can make people do a google image search and be all: “See all this horrific nonsense?” and they’re too horrified and disgusted to try and make their point.

      However I think it is slowly becoming easier than it was, when chronically ill people were neither seen nor heard, we were quietly put in back rooms and suffered the private shame of being nothing but a burden.

      Now we have the internet and a voice and a society that is slowly saying: ‘Hey, it’s not okay to bully people.’ And as long as we keep speaking out, it will get easier for the generations who follow us.

  2. Thank you for such eloquent, candid honesty. From another chronic illness patient, it's much appreciated and will be shared.

    1. I'm really glad people are finding it reassuring and useful. I read so many awesome chronic illness blogs by amazing people, but its not something I've talked about much in my own creative spaces.

  3. “Oh boo, you whore. I’m an animated corpse. Suck it up, princess.” this may be one of my all time favourite lines. Such a relatable piece and definitely sharing. Have heard versions of your conversation more times than I can count since becoming ill. People can indeed be arseholes.

    1. Its going on the list of things I should have printed on a shirt.

      Then it can go onto the list of shirts I can't wear to church or weddings.

      I'm glad people are enjoying this post. I was hesitant to post it up after I wrote it, but its fast becoming one of my more popular pieces.

  4. "2. No one has a right to judge anyone else’s health. Not even doctors. Doctors should diagnose and treat. There is a special place in hell for judgmental doctors."

    THIS is my favorite part. Been there, done that, found someone else.

    Yep, I understand this all too well.

    1. One of the worst things for me is talking to other chronically ill people and hearing how they've been victimized by their doctors. Its blatant bullying and it comes from someone in a position of power toward someone who is already vulnerable and exhausted all the time.

      The threat of it happening again, with another doctor, stops people from searching and I remember how horrible it was, going from clinic to clinic, trying to find someone who wasn't an asshole.

      I have a pretty good GP now, but sometimes I still have to put him in his damn place and remind him I am paying him for a service, he is not a deity on a throne, judging us lesser mortals without medical degrees. :P

  5. Well said, thank you! As a person with a chronic illness (Rheumatoid Arthritis), I have heard "you don't look sick" too often from coworkers - and people who are practically strangers but somehow feel compelled to comment on my illness.

    I enjoyed your comment about making people do a google search on SJS. Wish people would search google for RA before commenting about their own aches and pains in response to my disclosure of an RA diagnosis. I'm very sorry is you are in pain, but if you feel the need to compete, at least be informed. Oh, and know that I won't play that game with you.

    1. Unfortunately RA just doesn't have the visual impact of SJS and its unfair that people need to see rotting flesh and seeping wounds. I look 'fine' now, but the fact that I did, at one point, have all my flesh sloughing off, seems to earn me more respect from the punters than some other chronically ill people, despite the fact we look the same now.

      Feeling crappy is feeling crappy, regardless of what it 'looks' like.

  6. I mostly get mocked in the street for being a 26 year old with a walking stick. A guy snatched it off me once and threw it down the street saying I shouldn't be trying to force sympathy out if strangers...

    I collapsed to the floor because my balance is awful and he scared the crap out of me but a group of people got a good laugh out of it so he was fine.

    I don't know why anyone would compete to be sick. It took me 2 years to use my cane outside because I was scared of what people would say. I'd love to be able to go to town without an action plan, spur of the moment things... I miss them so, so much!

    1. That's such a horrible story. It makes me wish I'd been there to punch that guy in the dick.

      When was recovering from SJS huge areas of my skin just came off. I looked like I had leprosy or some awful flesh eating disease and people were genuinely terrified to come near me. No one would take money from me or anything.

      I mostly found it funny at the time, but I think it hardened up and killed off some part of me. People don't realize how debilitating that sort of ostracisation can be. Or how often it becomes genuine threats and violence, quite literally, just for walking down the street.

      Add to that you rarely have the energy, balance or strength to defend yourself and its suddenly no wonder most chronically ill people I know are apprehensive about leaving the house. Myself included.