Often with an invisible illness, when you are managing to get around and do things, people don’t see you as sick. This can be incredibly frustrating, but it also gives you the chance to decide whether or not you say that you are sick.
You may want to avoid this or say you are not sick for specific occasions, such as meeting someone new or at a job interview, or you may decide to not define yourself as sick.
Perhaps you prefer – as someone I know does – to consider yourself disabled, or perhaps you prefer to consider yourself as someone who isn’t sick, but just has health issues.I started getting severe headaches aged about 8 or 9 and by the time I when to secondary (high) school these had developed into migraines. I remember being taken into the big kids’ classroom at junior school so I could lie down in their reading area while waiting for my Mum to pick me up.
During secondary school, I spent quite a lot of time in the nurse’s room or being taken home from school with yet another migraine. My friends joked about me always carrying medications and I ended up first on preventative meds and then having to see a holistic doctor to help get control of the migraines (chocolate, caffeine and lots of other foods contributed as triggers).
But I never thought of myself as sick. I was just a kid that happened to get migraines. Maybe I didn’t think so much about it because they run in my family,
When I was about 13 or 14 I started getting excruciating pain in my knees sometimes as they gave way when running up stairs or turning corners. I didn’t think much of it, learnt to twist and shake the leg until my knee felt right and then continue on my way. My parents both had issues with joints not doing as they should so I thought little of it. But I now recognize the signs of subluxations, a part of Hypermobility Syndrome. I did not think of myself as sick – or disabled – in any way. It was just something annoying that I dealt with.
Around that same age I started getting lower back pain and was diagnosed with having too much of an arch in my lower back – something I now know is called hyperlordosis. My Dad has the same problem and I thought little of it. It was just another annoyance that I had to deal with. Physiotherapy exercises helped but I found them boring.
It was only after I developed severe IBS and Fibromyalgia Syndrome (Fibro) when I was 21 that I started to think of myself as being sick. The IBS, which was the worst symptom for some time, probably had something to do with this, as catching an infection is definitely being sick in my book and that’s how my IBS started.
The rapid development of my Fibro symptoms also made me think I was sick. It took me a few years to get a Fibro diagnosis and during those years there were plenty of times when I thought or hoped that I had something simple that could be treated – that I was sick but could be made better.
After I worked out what I had – a chronic illness – I slowly came round to the idea of being disabled as well as sick. But then I finally found a good doctor and got control of my Fibro. It’s only occasionally a real problem now, mostly just being there at such a level that I’m not sure what’s Fibro and what’s being normal-tired and normal-unfit.
I don’t think I’m sick now really. I still have a chronic condition but it is managed. I’m not really disabled by it. Am I back to being just someone with health issues? Possibly.
National Invisible Chronic Illness Awareness Week is a fantastic way of raising awareness that many people may look well but have a chronic illness.
After developing Fibromyalgia Syndrome (Fibro) whilst in her final year of University, Lindsey Middlemiss got involved in the online community and became a patient and awareness advocate through blogging and moderating on forums. Applying research skills learnt at Uni to Fibro, she delved into what is known about Fibro and is now a Fibro patient expert.Lindsey has set up a new charity in the
UK for Fibro Awareness – FibroAction www.fibroaction.org – which aims to make up-to-date and accurate information about the condition readily available to everyone, as well as improve public awareness of the condition.
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