Let's talk about Unseen disability - Life experiences

In recent months  there has been a lot of news coverage with regard the rising number of people that seem to be seeking a disability diagnosis and very often the news coverage infers that people seeking this are " At it", "Lazy" "Fake" or "Scroungers".

I have been epileptic since the age of 8 that I have known about. I say that as when I recently asked for some medical records, my record says much earlier.

When I got diagnosed, I was "banned" from cycling and swimming.

I can get the cycling ban but I don't get swimming. The logic behind swimming was that I might drown if I took a seizure in water. However, if can't to swim - your risk of drowning if you get into trouble in the water - is well higher than someone who knows how to swim. 

I was also not allowed to do cycle proficiency in the safety of a playground, to learn safety.

So I never got that logic - but that is how disability was viewed back then.

The mindset back then was so different.

A list of " You can not" You are different. 

I am lucky that my seizures are only triggered by lights. I am photosensitive. Only 3% - 5% of epileptics have this form of epilepsy.

There are pros and cons to this.

I did not have many seizures in comparison to other epileptics I know.

I have been able to be "stable" for some time and I am fortunate at the moment at least, to hold a driving licence. (Although I did have a period where I was not allowed to drive.)

The cons - "I don't look disabled" Whatever that even means.

I have struggled with this all my life.

During a period when I was unable to hold a driving  licence, I had to get my GP to write a letter to the council to argue a case for me to get a bus pass to help me get to college because the council at that time thought I was not disabled enough to get it.

In every job application I would semi tick the "Are you disabled" box  because I would say I have a disability but it doesn't affect my daily life.

Of course I can look back at that and say that is utter nonsense. The only reason I don't seizure is because I try to stay away from things that set them off.

So I may disclose my disability but people have made me feel - not disabled enough or a fraud.

When the Covid pandemic hit - I hit 2 high risk priorities. So I suddenly found my own disability rising to the fore. I had to rethink my own thinking on my disability.

A prime example of this was when I was asked to get vaccinations (the 2nd time) when I sat in front of the nurse (who had my notes on a tablet) asked me to justify why I wanted both vaccines. 

I said " I am epileptic."

To my utter surprise the nurse replied "You don't look epileptic"

I replied "And what does an epileptic look like exactly?"

 "Well if you say so, I will have to believe you!" she said

"Well its in my notes if you care to have a look"

She suddenly realised what she had said .... She gave me the jabs..... and I let it slide.

But for that and a few other reasons, over the past 6 years I have had to rethink how I view my disability,

It has not been an easy shift for me.

Not being disabled enough is something that appears to be a sound bite at the moment.

The soundbite from the government is that we need to reduce the number of people receiving disability benefit. There narrative suggests that those on this benefit don't work.

Of course there are those that can't work. However many fight hard to get into work and stay in work.

Many. like me mask their difficulties in order to fit in or look like they are coping.

If I return to my experience

A faulty light in a room could potentially trigger a seizure.

What does that mean for me? It means I could convulse in public. I could lose my dignity. It means I lose my car licence, which means I lose my business, It would also mean a bit of my independence is lost and if my kids were younger the ability to do the mum taxi jobs I love. This would be for a minimum of 12 months.

It would affect my confidence and my income... All because of a flicky light.

It is not something I fear.... BUT it is the reality of what would happen if a faulty light caused a seizure.

In the past year, I have started working more for employers and studying, rather than being self employed.

This has been an interesting experience. It has shown me that I mask and have developed coping strategies by accident. It is only now, that I have to work according to someone else's terms that I can see what I have done to mask my disability for decades.

AH

It has been very uncomfortable.  So I am once again rethinking my disability. It is painful and sore.

Acknowledging here ... can be hard. Asking for help can be hard. Trying to justify why you need help is never a pleasant experience for someone with a disability.

As for other disabilities....I probably have more than one.

The reason for the upsurge in ADHD and autism diagnoses is not because people want a label.

The reason there is a rise in the figures is because there is now a formal diagnosis and a greater awareness of the disability.

Many people are saying

"Oh.... that is why I feel the way I do."

Having a disability whether seen or unseen, diagnosed or not is never an easy road to be on.

Be kind.