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Why I'm Raising Awareness of Dysautonomia After My Experiences on the Tube

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So originally the idea for this blog article was born from frustration and I was unsure really even of the point other than to publicly rant about life as me. However, that all changed when I realized October, being Dysautonomia Awareness Month, was actually the perfect time to use both my experiences and the material I had to promote awareness not just for dysautonomia but for the struggles of others with invisible disabilities.

In my 30s with postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos type 3 (EDS), arthritis and fibromyalgia I find life frustrating at times, one of my main struggles being work. I have recently left my job as a casual nursery nurse to take up an office job. I assumed this would make life easier but never in my job considerations did I consider the impact of the commute. Eight stops on the tube seemed quite simple, driving to the station then getting the bus at the other end to the office. I was part of the trial of the “please offer me a seat” scheme from TFL and had my badge and freedom pass, so it seemed simple. I take tramadol at varying doses and sometimes can’t drive due to the effects.

My issues however became the journey home. Now with POTS, standing is a problem for me as if I stand too long I faint, with arthritis standing hurts and with the EDS my arthritis knees bend backwards and lock if I try to balance (i.e on a moving bus or tube) and the combination of all the things mean I get so tired so quickly that any prolonged walking or standing or physical exertion exhaust me. Have you ever been so tired that your body hurts just breathing? It’s like that, just from walking sometimes. So I discovered that if I sit and wait for my tube home I can’t get on the tube because the platform becomes too busy and I can’t board the tube. I can stand with my stick and lean on a wall and wait but I cannot stand forward as I’m concerned about fainting and where I might fall. People see me waiting and know I was there before them but when the tube approaches they will still push ahead or even push me out of the way to get on the tube. Now I know we all want to go home, but why would anyone push someone with a walking stick to do that? I have waited over half an hour to board a tube before.

When I make it onto the tube people rarely offer up a seat, even young people. I would be so angry if I knew my son was sitting watching YouTube while anyone less able was standing and struggling. However, mostly when I ask for a seat I do get one although I have been told previously that “I didn’t look disabled” or “I can’t be that disabled if I am working” (ironic as on my day off I’ve previously been told to get a job while using a disabled space at the shops). I’ve almost passed out getting off the tube many times, and I literally have to go to bed as soon as I get home due to the symptoms, which I know wouldn’t be so bad if I could just sit and wait for my tube, get on, sit down and go home. I am now at the point where I’m weighing up the symptoms caused by the tube journey or the symptoms I would have during the day if I didn’t take my tramadol. I cannot imagine how hard these journeys must be for people with greater mobility issues than myself. I’m only going to briefly mention how long it takes me and how hard it is to climb all those stairs at the tube station (no escalators).

I don’t know what the answer is other than awareness. The awareness of other commuters that although it may not seem like a big deal to you, it could have a huge impact not only on someone physically but how they may start to feel about themselves not being able to complete simple tasks like this. Awareness of who is around you while you sit in a priority seat staring at your phone. I’ve spoken to many people with similar conditions who have told me they do not feel confident asking for a seat if one is not offered. Awareness from TFL, as they no longer have staff in ticket offices or even on the platform at busy times at all stations managing the crowds. Awareness for parents to teach to their children.

Below is a video link to the video I made on one of my journeys. Sadly what you cannot see on the video is a lovely man who, when the train arrived that I boarded, asked the other commuters to stand back and let me on. I made the video to illustrate not only my issues as above but also to illustrate to other people embedded behaviors they may have without realizing. There’s a lovely man that offers up his seat as soon as he sees me alongside the people who walk on in front either not seeing me or pretending not to see me and watching me left on the platform knowing they have arrived after me as the tube doors close.

You can watch the video here.

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Thinkstock photo via alice-photo.

Originally published: October 26, 2017
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