Invisible illness – the struggle is still real

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I don’t consider my illness to be invisible. To me, it’s blindingly obvious.

When I look at my feet, I see the scattered red dots where my blood vessels have leaked and stained. When I look at my ankles I see the weird red and orange patches that no doctor can explain, just hanging out down there like a little fake tan accident. When I look at my arms I see the strange way they bend and the places where my joints don’t look right.

To other people, I look perfectly normal. Bog standard. Run of the mill. Just another face in the crowd.  I don’t look ill, (unless you get up close and personal with my face on a bad day and see all the lines and purple marks having a tired party) I mostly just look like someone who got up early and could use a sit down, which is basically all of us right?

I get up five days a week and cram myself on the train to go to work. I work all day, go to the gym or running in the evenings, see friends, eat out – I live a good life and I’m lucky, but every day I’m also aware that I could feel awful at any given moment.

The best way I can describe life with an illness like mine is that I’ve spent my (almost) 27 years feeling a bit ropey. For years I thought I was just unlucky. People, family included, would joke that I was a sick note or that I didn’t have an immune system and I just agreed. People can’t get their head around pain for no apparent reason when they’ve never dealt with it, so in many ways I wasn’t taken that seriously and that includes by doctors.

When I finally got diagnosed with having Ehlers Danlos syndrome after a long and arduous battle, the GP I saw as part of my follow up told me she too had an invisible illness and that she felt my frustration. She also said that it was likely to be a lifelong struggle to get people to understand that looking good doesn’t equate to feeling good.

She wasn’t wrong.

I still find myself not bothering to tell people when I feel really bad. If I have to limp for two days because my hip has come out of place, I’ll just get on with it when I could really use more rest. I still get disbelieving looks when I complain about not feeling right. I still get asked “REALLY ill again!?” if I do tell people things aren’t good.

You definitely do build up a resilience to be able to carry on when you’re feeling like crap with chronic pain conditions. Chronic illness in general is certainly a character building experience. It’s really been online, social media particularly, that I’ve found a strong support network. The internet has given people who suffer with rare conditions a forum to come together and it’s been extremely important to me. It’s so reassuring to speak to another person who just gets it and is living it too.

The majority of people I’ve connected with and turned to for help online have struggled at one point or another with trying to communicate to people that you can be seriously unwell but still look totally fine. It really is a thing.

How do you tell a stranger on a train that you need a seat when you look young, well and fit as a fiddle? How do you explain to your employer that despite the fact you were breezing round the office yesterday full of good cheer, today you can’t come in because you can’t move?

It’s a battle and it’s a tiring one and there are many people fighting it, so be kind to your mate who feels ill a lot, because you can never really know what’s happening to a person.

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