My invisible disability means commuters refuse to give up their seats

To put it simply, my body doesn’t like standing up.

Totally at random – often when I rise from a chair too quickly, or stand up for too long – I faint. 

It’s called syncope – it’s when you pass out, and lose consciousness for a short period of time. For me, it’s caused by autonomic dysfunction as a result of my condition, Ehlers Danlos Syndrome.

It means that public transport, and travelling, can be hard for me. I need a seat, or I can pass out and seriously injure myself.

It could even be fatal.

Except, not a lot of people seem to care at all about my invisible illness – especially not my fellow commuters, and transport companies.

For me, it’s a constant battle against prejudice for having a medical condition that doesn’t allow me to stand still.  

In fact, as a result, I try to avoid travelling as much as physically possible.

My condition is genetic – I’ve had it since birth, but wasn’t diagnosed until January 2015, aged 41.

I’d been getting awful migraines since the syncope started and, the day before my husband’s birthday, I suddenly collapsed after one.

I ended up in hospital for a week, where I was put on epilepsy medication – but I continued to have excruciating headaches and fall unconscious, without explanation.

I was terrified, as I had no idea what was happening to me. At one point, I convinced myself I had a brain tumour.

That October, I was diagnosed with EDS and joint hypermobility syndrome. I was given autonomic tests including a tilt table, which is used to explore potential causes of fainting. The tilt table caused me to lose consciousness within 30 seconds, with my blood pressure dropping to 50/28.

My life as I knew it changed forever. 

Since then, in eight years, the longest I’ve gone without fainting is six weeks. Sometimes, I can faint three times in one day.

I’ve had to spend my life savings on an extension to have a downstairs bedroom and bathroom built, as I’ve fainted on the stairs causing injury.

Today, I need to use disabled loos as normal ladies’ loos are too narrow for me to use safely, as I could faint and hit my head. But I look ‘normal’, so to speak, and people often feel the need to ask me why I’m using them.

They don’t know I live my life in a permanent risk assessment. Everywhere I go and whatever I do, I am constantly assessing. 

I’ve had to adapt my life in so many ways – the prejudice I receive from strangers because my disability isn’t visible is the hardest to endure

Doctors aren’t sure what triggered the headaches and fainting, or how to treat them, but I think it might have something to do with my coil – fitted just six months before my first episode.

I’ve since had it removed, but sadly the collapsing gets worse when I’m due my period.

The worst of it is, I can’t tell when I’m about to faint, either. It comes on out of the blue. Because of it, I have to work from home now in my job as a Streetworks Manager.

I’m proud that I’m still working though – and have participated in events with colleagues, raising awareness of my condition in attempts to minimise any stigma.

Except, attending hospital appointments isn’t easy.

A few weeks ago, I had to visit a London hospital for tilt table and heart tests. I decided on a 50 minute journey from Leagrave train station – 10 minutes from my home – direct to London Bridge, with the hospital opposite. My husband has driven me before, but it once took four hours, thanks to traffic.

Before I booked a train ticket, I checked my local station’s disabled accessibility and was shocked to find that it was only accessible by metal stairs. They’re the most dangerous form of access for me and would be life threatening if I collapsed.

I could die.

Then, I thought I would try Luton Town train station, but it was an inaccessible train station for anyone with a disability to travel to London.

So, I had to search through all nearby stations to find an accessible one, finding Harpenden, which is 12 miles away from me and has a lift, but the nearest that had the least risk for my condition.

I then went onto the National Railcard website to apply for a Disabled Persons Railcard and was astounded to find that I didn’t meet the criteria as I did not receive disability benefits.

Eventually, for my first hospital visit, I boarded the train but, since I have to be chaperoned at all times, my husband was with me. I was going to sit on the floor as the train was full and I didn’t want to start explaining about my condition in order to sit down – but luckily a kind passenger offered me a seat.

On the second hospital visit, I found out by looking online that I could request assistance to get a seat on the train. But when I did, the guard explained aloud – to everyone on the train – that I had a medical condition. People muttered under their breath and complained. 

It was almost as if they didn’t believe me – and wanted me to prove it. I burst into tears.

By the time I arrived at my appointment, I felt exhausted. Devastated, humiliated, ashamed – it makes me loathe to travel again. It makes me want to stay at home, hide away.

I can honestly say that living with this disability is hard and I’ve had to adapt my life in so many ways. I’ve even doubled my antidepressants to cope with the mental trauma, but the prejudice I receive from strangers because my disability isn’t visible is the hardest to endure. 

I choose to walk while I still can, but I want a safe, accessible and stigma-free environment to allow my independence – including when it comes to travelling.

Train companies do not do enough to cater for those of us with both visible and invisible disabilities – and commuters let stigma of disabled people cloud their judgement.

Even when someone’s life could be at risk.

As a result, I had a meeting with ThamesLink to attempt to raise awareness of the need for accessible trains and travel for all. They took my feedback on board.

I would like to see accessible train stations for everyone. I would also like society to understand that you don’t know what anyone is going through on appearance, and to just be kind.

I’ve been humiliated and upset so many times by people’s judgement. Living with this condition is hard enough without stigma and humiliation to contend with.

People may look completely healthy, but can have so much more going on underneath.

As told to Emmie Harrison-West

Do you have a story you’d like to share? Get in touch by emailing [email protected]

Share your views in the comments below.

Source: Read Full Article