Since I was diagnosed with cancer, I’ve had to face physical and emotional barriers that I’ve never before experienced in my day-to-day life.
As my cancer was in the bowel, the surgeries have all been on my middle and I now have a colostomy bag, plus a lovely hernia – a massive lump in my side where my intestines have escaped the cosy confines of the abdominal wall and burst forth unfettered.
I like to think that our guts are fed up of being the body’s most underrated organ and hernias are how they rebel.
I’ve been in and out of hospital, having surgeries that have left me in pain and require me to sit down a lot more than I used to. I love running, but the last time I tried to jog I became much better acquainted with the pavement than I’d have liked.
This is because I have numb feet due to chemotherapy, which brings risks of neuropathy – nerve damage that may remain permanent.
Plus, cancer makes you really, really tired. If it’s not the lingering traces of chemotherapy drugs, it’s the plain exhaustion of managing hospital appointments within a beleaguered NHS.
But more than anything, I’ve had to come to terms with being disabled.
I don’t like using the word – it feels like an appropriation, like I am taking something from a person who has a condition that is lifelong or more severe than mine.
In my mind, I am a person dealing with the after-effects of surgery – but I’m not disabled, and not being able to describe my situation in a way I felt comfortable with was starting to really get to me.
I wear a ‘Please Offer me a Seat’ badge and I use a disabled loo (it makes changing a stoma bag much easier to manage), but despite these shortcuts I still find navigating public space quite stressful.
I want to limit the very real risk of further damage to my core by taking it easy as much as possible – but this fills me with huge guilt. What if I take the priority seat, but there is someone in greater need who wants it?
The changes to my body also knock my confidence; whether it’s having to ask for the seat on the tube because no one notices the badge, or squeezing through a crowded pub while hoping no one wonders what this weird lump is that’s just brushed against them.
I’ve had double takes in the past when people realised I’m not pregnant, then tried to work out what’s going on, as if my belly is the conundrum on Countdown.
These are all little things that chip away at you across a day.
Nowadays, it seems like there is a lot of talk about labels – what we call ourselves and whether other people will join in.
Using long phrases like: ‘I’m lumpy and tired and sometimes in pain’ or ‘I’ve had abdominal surgeries so certain things are OK but other stuff would damage me further’, weren’t working for me any more.
In the end, my counsellor suggested that I use the phrase ‘currently disabled’, and suddenly everything fell into place.
It sounds so strange, but calling myself currently disabled removes the guilt I feel around the second word.
When I’ve talked about it with friends they’ve said they think it is a great ‘fix’ and can think of times in their own lives when they might have needed it, and wish they’d thought of it.
I am a person who is recovering from cancer and while the doctors are trying to put me back together in the wake of that, I do not know how much longer I will be in their care, or how many more complications I will face.
Words have a big impact; having a short, simple phrase to describe my situation – rather than a complicated sentence full of conditionals – makes life easier.
When you have physical problems, you try to find ways to better manage your situation, and the same goes for psychological problems. This is now one problem that I have solved.
A weight has been lifted and I am more comfortable using disabled facilities and priority seats (though I still look out for other people that might need them, too).
I feel empowered – because I finally have a way describe my situation.
I am currently disabled.
MORE: I was forced to apply for 250 jobs because employers couldn’t see past my disability
MORE: Ask about my disability if you’re curious, but don’t patronise me
MORE: My humiliating and degrading battle to claim disability benefits
source https://metro.co.uk/2020/01/05/cancer-dramatically-changed-my-body-but-i-feel-guilty-calling-myself-disabled-11271479/
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