The ramblings of a 20-something disabled, queer, feminist, Irish kitty

When people look at me they see a healthy, young, 20-something woman. They see someone in the prime of their life. They see someone who should be fit and full of energy. They see someone who should be able to run up a flight of stairs, or queue with everyone else.

You know what? I’d love to be able to run up that flight of stairs. I’d love to be able to walk around an entire museum without falling over. I’d love to be able to stand in a queue for an hour. But I can’t. Maybe, on a good day, if there was a fire I could run up that flight of stairs. On a bad day, I could drag myself up it as fast as my body would allow. But I have a finite amount of energy, and doing so would use up my entire allowance for that day.

I do believe that the disablism I suffer is worsened by my age. I have had middle-aged people demand to know why I am using the lift, when I look fit as a fiddle and should be able to run rings around them. I have had shop assistants laugh at me as I try to use the crappy lift in their store. I have had doctors reaching retirement tell me I am too young to be on as many medications as I am. Medications that other doctors have prescribed! I have had old ladies stare at me as I take out my walking stick. I have had people stare as I sit down in one of the disabled seats on the bus. I have had people scowl as I have taken out my radar key to use the accessible toilet because the queue to the ladies is too long.
The problem is that all of those people cannot see the constant pain in my joints and muscles. They cannot see the raging infections. They cannot see the fatigue. They cannot see that if I were to queue for more than a couple of minutes unsupported my legs would simply buckle under me. And they cannot see the guilt, the anxiety, the depression, the paranoia that rages inside my mind. Every time I use an accessible facility I feel guilty. I worry about using a service that someone else might need more. Of course, if someone in more need than me came along I would give up my seat on the bus. I am not the monster that strangers seem to think I am.

People look at me and they see someone who should be in work. I dread going back and having to field a million questions as to why I could not work for months. People look at me and they do not see the crippling depression. They do not see the terror that befalls me at the prospect of making a phone call. They do not see the frightened girl who is scared of strangers. They do not see someone who needs assistance to fill out a simple form. They do not see the mind that is plagued with flashbacks.

People look at me and they cannot understand why I cannot be impulsive. One of the things that I hate most about my illness is having to ration my energy. I have a finite amount of spoons, less than your average non-disabled person. To make matters worse, the amount of spoons I have can vary wildly from day to day. So when I want to do something fun, whether it’s go to the zoo or museum, or go to a weekend long convention, or even go to the pub for an hour, I have to stop and consider how many spoons I have available. My partner and I have adapted to this by being as organised as possible, and planning our days as best we can. Where possible, we try to have contingency plans in place as well. This may sound dull. This may make people think I am boring. But it is actually to ensure that I get as much enjoyment out of my day as possible. By finding out in advance how accessible a venue is, by planning in advance an alternate activity should the first plan turn out to be too strenuous, we ensure that no matter how I am feeling that day we try to make the most of it. People judge me for not being impulsive, for not liking surprises, for getting annoyed when people change our plans at the last minute. But it is because they have no idea what it is like to have to ration one’s spoons. They do not understand the worry that comes from having to gauge whether doing this activity will use up all my spoons for the next 2 days and prevent me from going to work the next day. People may think I am a spoilsport, but this is me trying to have fun.

Don’t get me wrong. I am not saying that people with visible illnesses have it easy, or do not experience disablism. I am simply trying to describe the special brand of prejudice that is levelled at someone like me, someone who is a young adult with invisible illnesses and disabilities.

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Comments on: "Disablism, Ageism, and Living with Invisible Illnesses" (3)

  1. Excellent post, and an experience I know very well. I use a wheelchair most of the time now, but back when I was more ambulant, in my early 20s, it was constant. There had been so many comments that I began to imagine that absolutely everyone who saw me sit down in public, catch a bus for the distance between two stops, let along get a taxi for the 200 metre ride home, would be judging me.

    When I began to use a wheelchair, no, not all problems solved – I’d prefer to be able to walk as much as I used to, of course – but there is less judgement of this nature. I remember one of the first times out in my power chair, a cheerful old lady declared, “Oooh lovely – I’m looking forward to getting one of those myself in a few years!”

    It’s a very crappy situation, because without the capacity for spontaneity, you can feel that, on some level, you don’t get to be a young person. But you do get judged for being one!

    One thing that helps me is that meticulous planning helps me to look forward to things. My family are a very disorganised bunch, so adventures when I was a child tended to arrive completely out of the blue. These days, I can look ahead at a trip, and think about what I’ll be doing, so the pleasure of it starts long before I set off. I even feel – and this may be personal – that all the anticipation is a comfort when I am too ill and have to cancel – part of me has already been there. That may not make sense – long day!

    Thank you for participating in Blogging Against Disablism Day!

  2. singingbirdartist said:

    Hi, I had agoraphobia and really heavy PTSD for 25 years before I got fibromyalgia and the constant judgement and prejudice definitely made things worse…I was fat but fit and strong because of working very hard on my allotment (garden therapy) and losing that has been very hard, but having struggled for 3 years I have just (2 1/2 weeks ago) got a rollator (walky wheels with a seat) and the first week was amazing, all the help, and smiles and people holding doors…I hadn’t realised quite how hard the invisible disability thing had been hitting me, even though I had all those years experience and was quite vocal/empowered about having invisible illnesses…
    So, this resonates big time! Thinking round stuff is the single most important way of handling spoons and forks I think – also knowing what makes the day bright and shiny and just worth it! I am an artist and having to give up painting has been…very hard….yes, I am pulling a face as I say that…but I have found other ways to be creative and have my first fibre art installation in a city park next weekend! Wheely dance!!
    here’s a link to my blog:
    http://singingbirdartist.wordpress.com/2012/11/30/skip-for-joy-a-yarn-winding-tutorial/
    disgruntled artist cat pix at bottom of post 😉
    glad to have found yours!
    all good wishes,
    singing bird

  3. I don’t know a single young disabled person that wouldn’t choose to work, take the stairs and run rings around everyone they met if they could. It’s not like we choose to be sick or unemployed. I’ve had people tell me I’m too young to be disabled, I wish someone would tell my illness that because it doesn’t seem to be listening.

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