I live in the UK, i am extremely lucky to have access to the NHS.
Whilst i am extremely lucky i and many others with invisible disabilities are put on the back burner and looked at differently because well we are invisible.
I am often spoken over or symptoms ignored because they are so closely linked. For example i went to my Gp for a tiredness, not being a mum tired or even i ache constantly tired it was different. I knew it was different but all i was told was it was probably just a flare up.
It wasn't turned out i was fighting off an infection that didn't present normally which they never do, no it wasn't easy to spot. But it would have been found quicker if i was listened too, i simple blood test would've shown the infection markers.
I have also been doubted by many professionals as well. Made to feel like a liar, a phony and an attention seeker. The doubt from Friends and professionals started when i was just a teenager.
I was a very "clumsy" teenager, lots of small breaks and falls, bumps and bruises - i was labeled the attention seeker by friends, teachers and professionals. Instead of looking into why i fell a lot, or bruised easily for 3 years the dr's told me i was depressed. Referred to counselling and put on antidepressants. New's flash it didn't fix me, if anything the doubt made me depressed.
I'll give my knees credit where credit is due, easy way to get out of P.E
This isn't an uncommon occurrence, invisible disabilities present differently, pain tolerance is different, pain is different. It's not like we need to treated differently we just need to be treated with care, compassion and respect like every other patient.
But it's the unknown that doesn't help, there are still so many questions that need answers when it comes to conditions like Ehlers Danlos Syndrome, Fibromyalgia, Chronic Fatigue Syndrome.
There is nothing worse than being doubted and feeling judged for being invisible. The vast majority of professionals are so kind and caring, they are undoubtedly amazing at the work they do. It is not something i could never do, but the small percentage make it so hard. Thickening the shell around the stigma.
How would you change health care? i would love to know.
Originally written for my personal blog - https://www.chronicallyliving.club/