Alex, her spouse and two daughters (Picture: Alex Akitici)To put it succinctly, my body doesn’t tolerate standing up.
Completely by chance – frequently when I arise from a chair too swiftly, or stand for too long – I faint.
It’s known as syncope – it’s when you lose consciousness and pass out for a brief period of time. In my case, it’s caused by autonomic dysfunction due to my condition, Ehlers Danlos Syndrome.
This means that using public transport and traveling can be difficult for me. I require a seat, or I might faint and severely harm myself.
It could even be fatal.
However, not many people seem to care about my unseen illness – particularly not my fellow commuters and transport companies.
For me, it’s a continual struggle against prejudice for having a medical condition that prevents me from standing still.
In fact, as a result, I attempt to avoid traveling as much as physically possible.
My condition is hereditary – I’ve had it since birth, but I wasn’t diagnosed until January 2015, at the age of 41.
I had been experiencing terrible migraines since the syncope began, and on the day prior to my husband’s birthday, I suddenly collapsed after one.
I spent a week in the hospital, where I was prescribed epilepsy medication – but I continued to have excruciating headaches and lose consciousness without explanation.
Doctors aren’t certain what triggered the headaches and fainting (Picture: Alex Akitici)I was terrified because I had no understanding of what was happening to me. At one point, I convinced myself that I had a brain tumor.
That October, I received a diagnosis of EDS and joint hypermobility syndrome. I underwent autonomic tests, including a tilt table test, which is used to investigate potential causes of fainting. The tilt table test caused me to go unconscious in 30 seconds, with my blood pressure dropping to 50/28.
My life changed forever as I knew it.
Since then, in the span of eight years, the longest I’ve gone without fainting is six weeks. Sometimes, I can faint three times in a single day.
I’ve had to deplete my life savings to have an extension added to my home in order to have a bedroom and bathroom on the ground floor, as I fainted on the stairs and injured myself.
Today, I need to use disabled restrooms because regular restrooms are too narrow for me to safely use, as I could faint and strike my head. But I appear “normal,” so to speak, and people often feel the need to question why I’m using them.
They don’t know that I live my life in a constant state of risk assessment. Wherever I go and whatever I do, I am always evaluating the potential dangers.
I’ve had to adapt my life in numerous ways – the prejudice I encounter from strangers because my disability isn’t visible is the most difficult to endure
Doctors aren’t certain what triggered the headaches and fainting, or how to treat them, but I believe it may have something to do with my intrauterine device – inserted just six months before my initial episode.
I have since had it removed, but unfortunately, the collapses worsen when I’m nearing my period.
The most difficult part is that I can’t predict when I’m about to faint. It happens suddenly. As a result, I now work from home in my role as a Streetworks Manager.
I’m proud that I’m still employed – I have even participated in events with colleagues to raise awareness about my condition and reduce any stigma.
However, attending hospital appointments is not easy.
I can confidently say that living with this disability is challenging, and I have had to adapt my life in many ways (Picture: Alex Akitici)A few weeks ago, I had to travel to a London hospital for tilt table and heart tests. I chose a 50-minute journey from Leagrave train station – just 10 minutes from my home – directly to London Bridge, where the hospital is located. My husband has driven me before, but once it took us four hours due to traffic.
Before I purchased a train ticket, I checked the disabled accessibility of my local station and was shocked to discover that it could only be accessed via metal stairs. They are the most dangerous form of access for me and would be life-threatening if I were to collapse.
I could die.
Then, I thought I would try Luton Town train station, but it turned out to be an inaccessible station for anyone with a disability traveling to London.
So, I had to search through all nearby stations to find an accessible one, and I found Harpenden, which is 12 miles away from me and has an elevator, but it was the closest station with the least risk for my condition.
Next, I visited the National Railcard website to apply for a Disabled Persons Railcard and was shocked to discover that I didn’t qualify because I didn’t receive disability benefits.
Finally, for my first visit to the hospital, I boarded the train, but since I require constant supervision, my husband accompanied me. The train was full, and I was prepared to sit on the floor as I didn’t want to explain my condition in order to secure a seat – but thankfully, a kind passenger offered me a seat.
On the second hospital visit, I discovered through online research that I could request assistance in getting a seat on the train. However, when I did so, the conductor loudly explained to everyone on the train that I had a medical condition. People muttered under their breath and complained.
It was as though 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 completely drained. Devastated, humiliated, ashamed – it makes me reluctant to travel again. It makes me want to stay at home and hide.
I would like to see train stations accessible to everyone (Picture: Alex Akitici)I can confidently say that living with this disability is challenging, and I have had to adapt my life in many ways. I have even doubled my antidepressant medication to cope with the emotional trauma, but the prejudice I face from strangers due to my unseen disability is the most difficult to bear.
I choose to walk while I still can, but I desire a safe, accessible, and stigma-free environment that allows me to be independent – especially when it comes to traveling.
Train companies are not doing enough to accommodate those of us with both visible and unseen disabilities – and commuters allow the stigma surrounding disabled individuals to cloud their judgment.
Even when someone’s life could be in danger.
As a result, I had a meeting with ThamesLink in an attempt to raise awareness about the need for accessible trains and travel for all. They took my feedback into consideration.
I would like to see train stations accessible to everyone. I would also like society to understand that you never know what someone is going through based on appearance, and to simply be kind.
I have been humiliated and upset so many times by people’s judgment. Living with this condition is already difficult enough without having to deal with stigma and humiliation.
People may appear completely healthy, but they may be dealing with so much more internally.
As narrated to Emmie Harrison-West
Do you have a story you’d like to share? Get in touch by emailing [email protected].
Share your opinions in the comments below.
MORE : Photographer snaps adorable photos of disabled dogs to prove ‘they’re happy’
MORE : Disabled people on benefits aren’t your enemy
MORE : ‘I’m a disabled person online – people have told me I should be put down’