Monday, 10 June 2019

Not Every Disability Is Visible

Dear Readers,

I am sick and tired of stories being told about invisible illness abuse! It is a daily reoccurrence and many people with invisible disabilities are suffering every day?!

I know there have been scams and cons over blue badges, but the majority of people who are approved of a blue badge need them. Why do people think it is okay to judge someone getting out of a car looking well?

People don't want to look ill, some people are only children. They don't want their illness on show!! Teenagers and young adults, or adults, they don't want their illness on show either!! I can't fathom how people have the integrity to say something and not just get on with their own business.

I know society are trying to become more "invisible disability" aware by putting signs on toilets like this one... 

People are using car stickers like my one...

I was given a blue badge at the age of 17... I would trade my damaged lungs and heart for healthy ones any day and not have my blue badge. But I CAN'T! I am living life to the best of my ability and if it means I need help and support to make sure I live it the best I can, they I will take it without hesitation. 

It doesn't matter what profession a person is in, even if it is within a hospital, a person with an invisible disability will still get judged. It was only the other day I attended my PH appointment at my local hospital and parked in a disabled bay, with a blue badge. I got out my car, and a nurse shouted at me from across the road and said, “they’re for disabled people you know.” I ignored her and as I walked past her she shook her head and tutted. I wasn’t going to stop and explain, I was off to my Cardiac clinic. When I was called into my consultation, who was the nurse with him? The nurse that shouted at me about my parking. I smiled at her and she looked VERY sheepish. After chatting with my consultant, I deliberately asked about whether a double lung transplant was my only cure. Of course, I already knew the answer. I replied, "yes I thought so, I’m glad I have my blue badge and oxygen". I looked straight at the nurse and she said, "I’m so sorry," My consultant looked at me confused and the nurse admitted what she had done. My consultant wasn’t happy at all and I said "it’s okay she’s apologised and I’m sure she will remember that not all disabilities are visible!!"

Now to have this altercation to begin with was horrible, to have it done by a nurse, was even worse! I think the way I dealt with my situation of keeping quiet when walking past her and bringing it up in my consultation was the best way to solve the problem. I think that nurse has learnt her lesson to not to think before judges others again.

It’s been a couple of months now since I’ve had my new prescription of portable O2. I feel lucky that I don’t need it 24/7 and only use it when I’m out having a busy day, or on a long car journey or anytime I feel I’m using a lot of my energy and the O2 can give me that extra boost. Luckily they can provide a canister that isn’t too big, and I’m able to have it on my back like a backpack. As you can see from the other photo, it’s of similar size to a champagne bottle! This kind of canister is consistent flow when on, not pulse flow. 

As I've said, parking in a disabled bay can be difficult due to judgemental people, but since having my portable oxygen, I find it quite useful to keep in my car for when I do get people coming over to me asking why I’ve parked in a disabled bay, I just ask them if they would like to hold my oxygen for me. It usually does the trick! 

Anyway, I’m glad I’ve got it now and even though I don’t use it too much, it’s nice to know I have it on me now. It makes days a little easier and I’m not so worn out the following day.

I really hope that even if it is just one person I have encouraged to think again about invisible illness, I will be happy. Remember not every disability is visible!

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