Suffering from something others can’t see doesn’t make it any less real

IMG_6064The other day I was on the tube. On the Northern Line. It was rush hour and it was packed, probably to a slightly dangerous level, as it every day. It was a bad day. A woman shouted at me and I shouted back and it was a Tuesday. The worst day of the week.

I get on the first stop of the line, so I always get a seat. I’m not that fussed about sitting. I commuted for the past three years standing, crushed against strangers with my mouth upsettingly close to armpits and chests, and I never really cared. I think you become immune to the misery of the rush hour crush after a while, which is for the best.

So there I was, sitting down, reading, looking totally able-bodied and pretty standard- which is what I am 75% of the time. However, there are some days where I can’t walk normally, or stand up straight properly, or support my weight evenly. Some days I limp from the minute I get up in the morning until I go back to bed. Some days I need to hold on to things to get up stairs and sometimes stairs are out of the question. There are even some days, thankfully rarely right now, where I should just stay at home and not move. I think if my hips could talk, they would regularly say “bitch sit down, we ain’t playing today.”

I’m not sure why my hips are gangster rap stars, but they’re not happy little souls.

That day on the tube, a pregnant woman got on,I didn’t see at which stop, and stood facing away from me, about three people down. I could barely see her through the crowds of people rolled together like a massive flesh burrito, let alone tell she was pregnant. Happens every day, I’m certain- pregnant people get on transport, takes a while for people to move. Well, I ALWAYS MOVE. I would damn sure have moved that day if I was nearer and noticed but I wasn’t and didn’t.

However, a woman standing in front of me, who had noticed, and was clearly harbouring a very bad mood (probably 5+ years of commuting on the hell that is the Northern Line) and she decided that she was going to get pregnant lady a seat. I was the nearest to her, so she started loudly telling everyone on the carriage how this ‘lazy ignorant girl’ was taking up a seat of the ‘needy’. She said some other similar comments (then I realised she was referring to me), and proceeded to tell me to ‘get out of the way’ because why would a young person need to sit. She went on a bit longer and people started to stare. She waved her arms around in my direction and pointed at my feet a few times. Then, a man moved. Pregnant lady looked mortified and I had to refrain from emptying my Evian bottle on this vocal woman’s head.

Not that she would know, but I limped, slowly, to the tube that morning. I walked, pretty much in agony and desperately needed to sit. I took painkillers for most of that day, I had to spend an hour the evening before with my legs elevated to stop them swelling and drain some of the excess blood that gathers down there- overall not a great time.

It’s not the first time something like this has happened. And this isn’t something that I can do anything about aside from wear a badge or explain it to complete strangers which will never happen.

The point is, to look at me, you would never know there was anything wrong. I’m even pretty sure some people close to me think I’m just a bit dramatic, which makes me keep this whole invisible illness quite low key. BUT IT IS THERE. I have a real, diagnosed, immensely painful, debilitating, exhausting genetic disease. Ehlers-Danlos is considered rare, but it’s more likely that it’s rarely diagnosed correctly, as are many conditions similar to mine.

I know people aren’t mind readers. I know you can’t expect people to think twice before speaking, but there are so many conditions that exist that we can’t see. A bit of thought goes a long way sometimes, that’s all.

 

12 thoughts on “Suffering from something others can’t see doesn’t make it any less real

  1. I’ve read a lot about EDS and it sucks that you have it and that people will assume you’re just lazy or ignorant. I have a lot of friends with invisible illnesses and it makes me more thoughtful towards others, I just with others extended the same courtesy x

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  2. I am really trying not to judge situations without knowing what’s going on for exactly that reason. You never know what’s really happening behind the scenes. Sounds like a terrible situation for you to be in. 😦

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  3. I know how you feel, I deal with chronic pain because of Hyper Mobility Syndrome. They’re not sure if it’s EDS Hypermobilty Type or HMS but it’s nasty and some days are worse than others.

    The worst are the older generation who rather than asking for a seat – so I can politely explain why I’m sitting down – just sigh and tut loudly.

    My big problem is that it feels impossible to ask for a seat even when I really need one if I can’t get one when I get on the tube. I don’t know why they have badges for pregnant women but not those of us who deal with chronic pain everyday… Not just for nine months.

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    • Same, I would never ask. I sometimes can’t even reach up to hang on to the bars on the tube because my shoulders are bad, but what can you do? It would be so much easier to have a badge but even then I think people would probably think “you can walk though?” The never ending battle! Hope your joints are doing okay in the cold! x

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  4. I want to thank you so much for writing this post. It perfectly explains how I feel when my coeliac disease flares up. I don’t just suffer the usual gastrointestinal symptoms of coeliac – it brings on an ataxia so severe that for the first 4 days post-gluten-incident I can barely get from bed to the bathroom without crawling.

    I wish that people would stop to think before they act like this woman did. Asking politely rather than shaming goes a long way.

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