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To put it simply, my body doesn\u2019t like standing up.<\/p>\n
Totally at random \u2013 often when I rise from a chair too quickly, or stand up for too long \u2013 I faint.\u00a0<\/p>\n
It\u2019s called syncope \u2013 it\u2019s when you pass out, and lose consciousness for a short period of time. For me, it\u2019s caused by autonomic dysfunction as a result of my condition, Ehlers Danlos Syndrome.<\/p>\n
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.<\/p>\n
It could even be fatal.<\/p>\n
Except, not a lot of people seem to care at all about my invisible illness \u2013 especially not my fellow commuters, and transport companies.<\/p>\n
For me, it\u2019s a constant battle against prejudice for having a medical condition that doesn\u2019t allow me to stand still.\u00a0\u00a0<\/p>\n
In fact, as a result, I try to avoid travelling as much as physically possible.<\/p>\n
My condition is genetic \u2013 I\u2019ve had it since birth, but wasn\u2019t diagnosed until January 2015, aged 41.<\/p>\n
I\u2019d been getting awful migraines since the syncope started and, the day before my husband\u2019s birthday, I suddenly collapsed after one.<\/p>\n
I ended up in hospital for a week, where I was put on epilepsy medication \u2013 but I continued to have excruciating headaches and fall unconscious, without explanation.<\/p>\n
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I was terrified, as I had no idea what was happening to me. At one point, I convinced myself I had a brain tumour.<\/p>\n
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.<\/p>\n
My life as I knew it changed forever.\u00a0<\/p>\n
Since then, in eight years, the longest I\u2019ve gone without fainting is six weeks. Sometimes, I can faint three times in one day.<\/p>\n
I\u2019ve had to spend my life savings on an extension to have a downstairs bedroom and bathroom built, as I\u2019ve fainted on the stairs causing injury.<\/p>\n
Today, I need to use disabled loos as normal ladies\u2019 loos are too narrow for me to use safely, as I could faint and hit my head. But I look \u2018normal\u2019, so to speak, and people often feel the need to ask me why I\u2019m using them.<\/p>\n
They don\u2019t know I live my life in a permanent risk assessment. Everywhere I go and whatever I do, I am constantly assessing.\u00a0<\/p>\n
I\u2019ve had to adapt my life in so many ways \u2013 the prejudice I receive from strangers because my disability isn\u2019t visible is the hardest to endure<\/p>\n
Doctors aren\u2019t sure what triggered the headaches and fainting, or how to treat them, but I think it might have something to do with my coil \u2013 fitted just six months before my first episode.<\/p>\n
I\u2019ve since had it removed, but sadly the collapsing gets worse when I\u2019m due my period.<\/p>\n
The worst of it is, I can\u2019t tell when I\u2019m 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.<\/p>\n
I\u2019m proud that I\u2019m still working though \u2013 and have participated in events with colleagues, raising awareness of my condition in attempts to minimise any stigma.<\/p>\n
Except, attending hospital appointments isn\u2019t easy.<\/p>\n
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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 \u2013 10 minutes from my home \u2013 direct to London Bridge, with the hospital opposite. My husband has driven me before, but it once took four hours, thanks to traffic.<\/p>\n
Before I booked a train ticket, I checked my local station\u2019s disabled accessibility and was shocked to find that it was only accessible by metal stairs. They\u2019re the most dangerous form of access for me and would be life threatening if I collapsed.<\/p>\n
I could die.<\/p>\n
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.<\/p>\n
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.<\/p>\n
I then went onto the National Railcard website to apply for a Disabled Persons Railcard and was astounded to find that I didn\u2019t meet the criteria as I did not receive disability benefits.<\/p>\n
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\u2019t want to start explaining about my condition in order to sit down \u2013 but luckily a kind passenger offered me a seat.<\/p>\n
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 \u2013 to everyone on the train \u2013 that I had a medical condition. People muttered under their breath and complained.\u00a0<\/p>\n
It was almost as if they didn\u2019t believe me \u2013 and wanted me to prove it. I burst into tears.<\/p>\n
By the time I arrived at my appointment, I felt exhausted. Devastated, humiliated, ashamed \u2013 it makes me loathe to travel again. It makes me want to stay at home, hide away.<\/p>\n
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I can honestly say that living with this disability is hard and I\u2019ve had to adapt my life in so many ways. I\u2019ve even doubled my antidepressants to cope with the mental trauma, but the prejudice I receive from strangers because my disability isn\u2019t visible is the hardest to endure.\u00a0<\/p>\n
I choose to walk while I still can, but I want a safe, accessible and stigma-free environment to allow my independence \u2013 including when it comes to travelling.<\/p>\n
Train companies do not do enough to cater for those of us with both visible and invisible disabilities \u2013 and commuters let stigma of disabled people cloud their judgement.<\/p>\n
Even when someone\u2019s life could be at risk.<\/p>\n
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.<\/p>\n
I would like to see accessible train stations for everyone. I would also like society to understand that you don\u2019t know what anyone is going through on appearance, and to just be kind.<\/p>\n
I\u2019ve been humiliated and upset so many times by people\u2019s judgement. Living with this condition is hard enough without stigma and humiliation to contend with.<\/p>\n
People may look completely healthy, but can have so much more going on underneath.<\/p>\n