Welcome to the freak show – how illness and disability defines and redefines you

by Kate Jennings

Illustration of tired man with an illness and disability: white drawing of man on red background. Image of article on whether or not Illness and disability define a person.
Caption:

I felt like I was a freak and that I should be ashamed of who I was.

Credit:

©bernardojbp /Adobe Stock

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Does illness and disability define a person?

This is a question that is important to many dealing with an illness and disability. Whether it’s a mental or chronic illness or a physical disability, you can be damn sure it will have an impact on your day-to-day life in some way or another.

Illness and disability will effect where you go, what you do, how you feel about yourself, so in many ways, it defines every aspect of who you are as a person.

You may feel trapped by the way you feel your illness or disability defines how you live your life or how you’re seen by others, because, let’s face it, people will see you differently and may even treat you differently than other ‘normal’ humans.



You wouldn’t like to see me naked

I have an invisible illness and disability.

To look at me bowling down the street, you wouldn’t think there is anything not ‘normal’ about me (apart from the fact I’m easy on the eye). No one would treat me differently.

Though the story would change if I decided to bowl down the street in nothing but my birthday suit – not only would I be arrested for indecent exposure, people would wonder what the hell all those scars are about as well as the bag-like contraption hanging off my stomach. People would start to treat me differently.

Even without going down the indecent exposure route, my illness and disabilities define me in the way that I do (at some stage) have to tell people about it. It isn’t the first, second or even third thing I may say to them, but because it is such a big part of my life, it does come up.

When I’ve been invited to sleepovers in my youth or as an adult, going on holiday and trying to sort out sleeping arrangements, the whole illness thing is like an albatross around my neck – stuck there, not going anywhere fast and at some point it has to be brought up.

I have to give attention to the medical accessories, like the piss bag (urine drainage bag) and the poop bag (bag that sits over the ileostomy) on a daily basis. These fun bags generally need attention lavished on them in the morning, so it is essential that I’m near a bathroom. Also the very fact that I have to attach a night drainage bag to my catheter every night also means that if I have to share a room, it needs to be with someone who knows about my illness and disabilities.

As a child sleepovers were never possible. I couldn’t manage the bags by myself, which meant my mum would help me out and taking my mum to a sleepover would have been a tad awkward, so it never happened.

I also didn’t want the attention that came with having to tell someone about the shit (pardon the pun) I have going on – it came with questions that were a hell of a lot more difficult to explain as a child.

The shame I felt about the various elements of my illness and disabilties was magnified by a thousand whenever I had to tell another person about it. I felt I was being judged. I felt that I was less of a person because of my illness and disabilities. I felt like I was a freak and that I should be ashamed of who I was.

Illness and disability are definitely defining factors of who I am and though most of the people I’ve met in life have been decent human beings who didn’t give a tiny rat’s arse about my illness, there were those who would pity me – and sometimes that is worse.



I’ve got pity in my pants and you’re invited

Welcome to the pity party! That’s how it feels sometimes. You tell someone you’re ill, they get a sad look in their eyes and then you die a little bit inside.

At school, one of the first times I encountered this was after a swimming lesson. My mum had to come and help me change. The catheter needed to be unplugged and reattached to my leg-bag (a day drainage system for the urine) and then the bag strapped to my leg. This was of course during the saga of peeling off my swimming costume to dry me, whilst using the towel to shield my abnormal body from the curious eyes of my classmates and then attempt the putting on of dry clothes.

Other parents who became aware of the routine, used to look at me with pitying, sad eyes when they came to collect their children. I knew what they were thinking; ‘poor ill girl. What she has to go through.’ And in many ways I let the way they saw me define how I saw myself.

Did I ever think I should be pitied? No, but that was how I thought others saw me. The ill girl who is so different from all the other ‘normal’ girls out there. So being ill did in many ways define me.

Even as an adult, the pity party continues. In a room, overcrowded with chairs and bodies, waiting to be called by a nurse to be prepped for day surgery, a woman started talking to me.

She was not backward about coming forward and asked me outright what I was in for. As all of us were urology patients, I told her that I was there for a revision of my mitrofanoff (the channel made out of a part of my body that I use to catherise my bladder). I knew she would understand the terminology and she went on to talk about how difficult it was to have all these surgeries and that it must impact me with having children.

I was a little taken aback. The children angle hadn’t crossed my mind, but it had hers. I was honest and told her I couldn’t have children. She stopped and considered me, the sadness and pity creeping into her eyes. She said how sorry she was to hear that and it must be really hard to know I could never have children of my own.

In truth, not being able to have children wasn’t an issue and I certainly didn’t need anyone to feel sorry for me. Though this was another example of how my illness defined me as ‘the girl who can’t have her own children’ in the eyes of others.

“I am my illness and disability and my illness and disability are me, but I can also pole dance and that’s pretty sexy”

So many choices, so little time

You are defined to an extent by the choices you make. Every day you have to make choices that are defined by your illness and/or disability.

Whether it is the food you eat or whether you should go out to that party, your illness will impact the choices you make. Here are just a few of the choices I have to make:

  • Do I take the risk of going out even though I feel a may be getting a UTI?
  • At what point do I call the doctor or go to A&E – can I wait out my symptoms?
  • Should I take the antibiotic offered by the GP or now I’m feeling better, should I wait to see if the UTI has passed?
  • Do I go out two nights in a row? Do I have the energy to do that and do I risk getting ill off the back of it?
  • My ileostomy bag has been coming off a lot, so do I take the risk of going to the cinema and being potentially embarrassed?

It is difficult to know whether you’re doing the right things and all the choices you make come back to your illness and disability. It is never something you don’t take into account.



Redefining illness and disability – it’s not all bad

But through all the choices you have to make with regards your illness and disability, despite the pitying looks you may get from people who know no better, illness and disability is also the way you redefine yourself.

I believe that the experiences I have had because of my illness and disabilities and the choices I have to make because of them, have helped to redefine me as well.

I make the most of the times I am feeling well by taking on activities or interests that help keep my life vaguely interesting. A few years ago I had enough energy and strength to take up pole dancing. Yes, pole dancing. An exercise that requires strength and flexibility and though I had neither of these things in spades, I did what I could and improved for the few months I took classes.

Pole dancing increased my confidence. For the first time in forever I could actually walk in heels because of the muscle strength you build and in all honesty, I have a little job to fall back onto if times get hard!

Being ill has redefined the way I look at how I take advantage of what is out there in the big wide world. I am still limited to places in the world I can travel to because of the expense that is travel insurance and quite frankly I’m not a massive fan of flying, but I still go when I am able.

I would argue that having to live with illness and disability has made me more empathetic and compassionate. That isn’t to say that those who aren’t living with illness and disabilities aren’t those things, but I am able to know what it feels like to struggle because your body has to constantly adapt and sometimes just won’t work the way you want it to.

I believe my experiences have made me a stronger person. Being in pain, dealing with invasive and unpleasant hospital procedures, seeing my body obtain more scars, has put a fight in me that I don’t believe I would have had if I weren’t ill. I am more determined to get through painful moments and hopeful to come out the other side.

I don’t know about you, but I always used to wonder what my life would have been like without my illness and disabilities. Would I have been a completely different person? Would I have achieved more or less? Would I have been more complacent or strived harder to make things happen for myself?

I had a conversation with a friend who asked me who I would have been if I wasn’t ill. At the time, I told her I would have been more academic and have gone to the grammar school that my parents, at the time, decided they didn’t want me to go to because they felt it would put too much pressure on me. I felt I would have achieved more in my career than I had at the time.

I was saying my illness and disabilities defined the person I became and I believe that is true to an extent. Certainly a life without illness and disability would have meant I would have led a different life.

But I am never going to experience what it is to be a fully functioning, ‘normal’ human, but my experiences have giving me a lot of other attributes that have positively redefined me.

I am my illness and disability and my illness and disability are me, but I can also pole dance and that’s pretty sexy.


Republished with the kind permission of Kate from her blog:   The Indisposed

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Profil photo of Kate Jennings. Her hair is blonde and short and she is wearing a muted red lipstick. She looks intensely off to her right and is wearing a black t-shirt. although we can only see her head and shoulders.
Article by Kate Jennings

Kate Jennings always thought she was a writer, but didn’t believe it until her kidneys went into failure and showed her they don’t always have it in for her… kinda.

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