18 February 2016

There are no wins in having it worse. Chronic illness and disability hierarchy.

Two pictures of Carly Findlay wearing workwear and pyjamas

This is sore, and this is sore.

On the left, I'm dressed for work. I need to work - to pay rent, to be able to travel, eat out, buy clothes and save for the future. I also need to work to feel valued, to be involved, to contribute to society and to use and develop my skills. And it's a social outlet.

On the right I'm dressed for hospital clinic - as a walk-in patient because I really needed to see a doctor. I saw five doctors and a nurse at the hospital - all offered me advice about antibiotics, immunisation, pain relief and infection control. It was good to talk to professionals who understand.

The photos were taken less than a day apart.

While I am lucky to lead a really full, active life, I'm still sore. I rest in bed a lot. Most of my writing is done in bed. Though I'm smiling, I'm still sore.

I wear pyjamas a lot. I wore them to the hospital. Thank goodness for the fashion gods that have made soft pants a trend, and pyjama pants stylish. I also wear pretty dresses - I love to dress up.

I've been very sore for the past six weeks. Those who aren't close to me wouldn't know it, because I look the same and carry on the same most days. Always red, mostly smiling, my mind never switches off.

Someone recently said I can't really be in pain because I lead an active life (working, travelling, writing, in a relationship) - and that's unrelatable to others in pain, who are unable to lead active lives. Bullocks to that. It's only one person who said these things, but I can't shake it - especially when I'm not well. I always think of their words now.

This kind of hierarchy in the disability and chronic illness community is damaging. It plays on self esteem, confidence and validity of illness, disability and pain. It diminishes achievements. And it contributes to the constant guilt of being unwell - even when I am 'overachieving'. And I bet it's a lonely, resentful existence for those perpetuating it.

I absolutely acknowledge that many others have it worse than me. And others have it better. But I don't pit us against each other. Hierarchy of conditions is rife. This isn't the only time it's happened to me. And I see it happening to others too - medical conditions are often an excuse for bad behaviour.

The "healthy disabled" are disregarded, an assumption that they haven't got much going on that affects their health.Yet I know people in wheelchairs, who some would assume only have a mobility restriction, who are fighting for their lives. Since I've identified with having a chronic illness and disability, I have noticed that while we have different diagnoses, our experiences are similar - especially the way society puts up barriers for us. We shouldn't have to fight the battle within our community. As I wrote four years ago, one upmanship isn't cool.

I wonder whether being around others with chronic illness and disabilities perpetuates one upmanship, especially when those people are online. In 'support groups' (which aren't half as supportive as the title suggests); there is a race to the rarest. Memes are made, with slogans of reality - broken bodies, lonely minds, families not believing them. It's easy to evoke empathy from these memes, but it's also easy to question whether they serve any purpose other than dwelling. And I also wonder if this hierarchy is perpetuated when some don't have a broad political view aaboit disability?

Mum tells me not to worry about what others think of me. And usually I don't. But this hurts. It does. Pain is not a competition or something to be invalidated by someone else experiencing similar. There are no wins in having it worse. No one knows the pain another person faces. We are all doing the best we can. I'm tired of spectating - or worse, being an inadvertent, unwilling contestant - in the Oppression Olympics.

(Image description: me in workwear - a white top with black collar, and black pants; me in pyjamas - blue top, blue floral pants, denim jacket.)



  1. Well said. Thanks for explaining that so eloquently.
    Best wishes for your wedding - may it be a wonderful day celebrating life and love together with your beloved and your family and friends.

  2. I don't think it is just within the disabled community that people are like this. Insecure, ignorant, self-centred jealous people are everywhere. As you say it must be difficult to be them. Please, please try to put their nastiness out of your mind. You only need to be true to who you are and the important people who you love know you.

  3. Sorry you're in or have been in pain. Pain makes everything else not work - it sucks up mental energy to deal with it. And when you've had it for a while, it seems like you've had it forever and will never get rid of it.

    Everything about having a body which doesn't work as well as it could is difficult. And interacts with everything else.

    I can do things other people with disabilities can't - and vice versa. So?

    We require accommodations. If I'm struggling with my walker, it's nice when someone takes an extra second and holds the door open so I can get through (assuming that's what I need at that moment). Last Sunday I had someone in the Princeton U. chapel climb up on the side stone benches to walk fast past me - she didn't even say excuse me (I would have moved over). In a church! Such behavior. If she had been struggling with a backpack full of textbooks, I would have waited or said, May I help?, or said Excuse me if I needed to get by that bad.

    Simple human courtesy would go a long way.

  4. Hey, pain is pain. People dismiss my pain because I'm gifted. Read my post about Brandenn Bremmer for more information and use the tag #GiftedLivesMatter to raise awareness of the fact that higher intelligence does not make life less complicated.

    Also: Congratulations!!!! :D

  5. I have lived most of my life under my sisters label of being FASD, however I'm not a criminal, I went to college, I've worked varied fields, I volunteer, but the biggest part of my battle is coming to terms with what IS really the problem, Depression, PTSD from trauma in childhood, abandoned child, shuffled in the system, bullied, plus some physical pain that I have had for almost 20 years, ( golfers elbow) not from golfing lol.True that people could be more understanding, and it will take time, I probably could add ocd, or another unidentified learning disability, but you are right when you said that some of us are Disregarded, there are Huge cracks to fall into, society has simple definitions and high expectations.Im glad to meet someone else with the same issues, maybe a collaborative blog, with the meme simple definitions of disabilities, high expectations of society, and how to bridge the gap, or educate?
    Take care, look forward to reading more.


Thank you for reading my blog. I love receiving comments :)
I really appreciate the time you've taken to write to me, and to share something about yourself.


Related Posts with Thumbnails