If you want to read about my journey with my eye disease, please click here.
If you want to read about my life with trigeminal neuralgia, please click here.
When people talk about disabilities, they tend to think of physical impairments, or someone in a wheelchair. Then they remember the invisible illnesses, such as having autism, being blind, or deaf, or having diabetes. They will also consider people who have long term illnesses that require hospital care, like cancer.
A very long time ago, before I was diagnosed with an eye disease, I wrote a blog post about my feelings on the label of being disabled. I personally don’t see myself as disabled, but I do actually have disabilities and medical requirements that I have to work with on a daily basis.
I live with conditions that cause me lots and lots little and big inconveniences. These inconveniences happen all the time. I’m constantly reminded of how definitely not able I am to do certain things.
An old HR manager of mine once called me disabled in a conversation and I hadn’t given him any indication that I was okay with this label, and he still didn’t help me when I had a requirement that needed meeting, despite him considering me disabled.
I am not blind, but I live with a visual impairment. This is not taken seriously by most people, because I can see okay with one eye and I don’t look like I’m struggling if you saw me in person, going about my day to day life.
I look physically able, but I also live with a chronic pain condition that is called ‘The Suicide Disease‘. I am in pain all the time. Lots of normal, every day things cause me pain. Ice in your drink, the air conditioning in your office, or your car, the window you’ve just opened, touching your face, kissing your partner, smiling, speaking, laughing.
But if you passed me in the street, you wouldn’t have a clue.
Living with two invisible disabilities means that I am not taken seriously at all. I don’t class myself as being disabled, because I don’t feel disabled enough, but no one else sees me as disabled enough either. Even the manager who called me disabled didn’t actually do anything he should have done to accommodate my needs. I needed an air conditioning unit that was unsuitable turning off. That was all I needed and it didn’t affect anyone else in the team, just me and where I was sat. He didn’t help me, offer me a DSE assessment, offer me an occupational health referral, or ask someone in the facilities department to help me. I ended up approaching the facilities manager myself and having the unit turned off.
Now, a few years later, I have an occupational health plan in place that means I have to have a suitable working environment set up for me in my office by my employer. This plan has been in place since the summer of 2019 and, although I have been off on maternity leave for a year, I have been back in the office now for around 9 weeks, a date which I agreed 9 months ago.
I returned to work following my leave to no desk, to an unsuitable working environment and to a HR department that have ignored my requests, despite promising it would all be arranged.
I’ve heard blind people talk about using their cane to show they are blind to the public, to make their invisible disability visible. People are now wearing sunflower lanyards to show they have an invisible illness. Do I need to do something visible to be taken a bit more seriously?
I think I’m too nice sometimes. I recently wrote about my request to the HR team at my work and how I apologised for having additional needs.
The only time I receive help is when I kick up a fuss. I have to shout to be heard and not all people with disabilities have the energy to fight all the time.
I look back at myself over the last few years and I can’t believe how much I’ve let myself be fobbed off by different doctors, or people at different companies I’ve worked for. I know how to make myself heard and I know I’m not doing it enough.
Do I need to adopt the label of disabled in order to get the help I need? Do I need to make my invisible disabilities visible? Do I need to really kick up a fuss every single time?
I sometimes feel the weight of hundreds of people stood behind me, who face the same problems I face, or have faced before. If I don’t stand up now, it means someone else will have to stand up in the future and the whole reason I have to stand up now is because someone else before me didn’t, or couldn’t, fight to be heard. Not everyone has the fight in them.
I think I’ve reached a point in my journey, of both my vision and my pain, where I’ve just had enough of not being disabled enough.
After a bad experience in the office yesterday, I have made a promise to myself to stand up every single time I’m not treated how I should be. I would never expect someone who needs a wheelchair to climb a set of stairs and I shouldn’t expect myself to go into work to have my chronic pain triggered, or to sit in an office where I can’t see my computer screen to the best of my ability.
What I’m doing every time I apologise, or skirt around the problem, is saying it’s okay to treat me and others like me like we don’t matter, so I think it’s time that I made a bit of noise.
To read Your Pain Is Worse Than Mine, click here.
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