Things People with an Invisible Disability Wants you to Know

It's not easy living in the UK with a chronic illness that is (sometimes) completely invisible to others. I have Fibromyalgia and Endometriosis, I spend some days on crutches because I have severe muscle weakness in my right leg during a flare up and it is HARD.

Being on crutches is difficult but honestly, sometimes it is even harder when I am just walking around like a regular human being. At least on crutches people are regularly reminded of my physical limits and I am not constantly fighting to be heard and respected.

Over the past two years, my health has worsened and I have been struggling to keep up with the fit and able-bodied people in my life. These are the things that I think everyone should know about individuals with invisible disabilities.

1. Parking

I have a blue badge, otherwise known as a disabled badge. I am entitled to use this regardless of whether I am on crutches, in a wheelchair or walking and appearing (to the outside world) able-bodied. You don't have the right to question me about this at all. Ever.

As long as my disabled badge is displayed when I am using a disabled parking spot, mind your own business because these things are like gold dust. You aren't given one for no reason. If you have one, you need it.

Parking wardens can scan this badge to check that they are valid, in date and can be used. The police can do the same. If you are neither, then move on with your day. Too many disabled people, who are trying their best to just survive, are being harassed by nosey bystanders who think they have the right to personal medical information. You don't.

My friend's four year old also has a disabled badge, she has three holes in her heart and breathing difficulties. Recently a woman took it upon herself to get out of her vehicle and publicly berate my friend whilst she was getting the pushchair out for her child (the child was in the back of the car) for using disabled parking. She carried on shouting until my friend removed her four year old (and the oxygen tank) from her vehicle.

The woman then quickly left without apologising.

You are making lives harder than they need to be. Mind your damn business.

2. Productivity and Pain

If I spent every day that I was in pain, in bed crying, I would never leave my bed. The fact is that unless it is of a level where we think we might die, we have to move and carry on with our lives. Most of us don't have the luxury to lie in bed all day and be taken care of.

If you see your chronically ill friend, relative, co-worker or neighbour out and about, don't assume they aren't in pain. We are. We just have no choice but to keep going.

On Friday, I was at work whilst on Oramorph (liquid morphine) and attempting to carry on as normal. I have absolutely no option to stay at home every time I feel awful, I would find myself without a roof over my head and without food on the table.

It is also shocking what you can tolerate when you are constantly in pain. What would cripple a normal able-bodied person, feels like very little to us.

3. Can't do anything right

We can't do anything right. If we stay in bed all weekend (to try to rest and prepare our bodies for work the following week) we are lazy and should be trying harder. If we try and keep up with our social lives, we obviously aren't suffering that badly. If we have to take a day off because we didn't rest then we have let everyone down.

Truly think of the realities we have to live in. How can we win?

4. No yoga, thank you

We have heard it all. Try yoga. Try cutting out caffeine. Try cutting out sugar. Have you cut out gluten? Acupuncture should help. What about hydrotherapy? You should get more exercise.

Have you tried sacrificing a virgin under the third full moon of the year, whilst completely naked and speaking Latin? Hell, at this point we've already heard/tried/considered it.

You don't wake up one day, grieve your entire active life and accept that you will live in pain for the next four decades without trying absolutely everything. We know you are well meaning, but stop.

5. Benefits

The old benefit system was very easy to scam. We all know this. We all (I'm sure) grew up with parents that used to warn against people stealing tax payers money so they can live a life of luxury on disability benefits without actually having to do anything.

The thing is: the system has changed. It is now extremely hard to claim any kind of disability benefit. Extremely. Hard.

Even if you are completely incapacitated and struggle to walk due to crippling pain you have to go through a three step assessment process and then most people have to go to tribunal before they receive any money at all. The money they do receive is nowhere near enough to live on. My Personal Independence Payments (PIP) is barely enough to cover the cost of the treatments I have to try to remain active and working.

End Note:

The lives of disabled people (visible or not) are really hard. Please do not be someone that makes them harder. We just want to live. I would love to go to work and come home and still be physically capable of doing things. Some days my partner has to cut my food for me because I can't even do that. I don't need added issues.