Share What It Is Like to Live with an Invisible Illness

Share What It Is Like to Live with an Invisible Illness
June Dickie Fibromyalgia

I am a 47 year old big Scottish lass who met her partner in 2008 and just a few months later was diagnosed with fibromyalgia. Looking back I am sure I have had this since I was a teenager as I recall a few things happening to me that fit in with symptoms of fibromyalgia. It was diagnosed as depression firstly but I knew...

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Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?

I wish people understood how badly it affects a person's life and that we are not lying or being lazy when we are flaring up. Having to cancel plans at short notice is something that happens quite frequently, even having to change medical appointments too. It's not because I can't be bothered, it's because I am too unwell to get out of bed so I'm not able to dress or get ready to go out. I also wish that some of my friends, whom I have lost over time, understood why I cancelled plans and that they meant a lot to me, but they obviously didn't understand how fibromyalgia affected me or they would still be friends with me now.

Has any one told you that "you don't look sick?"

There have been times when I have heard "you don't look sick" or "you are being lazy" or "it can't be that bad, I have a headache and it's worse than your pain" and so on.  It makes me feel like crap and I am already feeling like crap without being told these things!

Tell us, who is your biggest support system while coping with fibromyalgia?

My close friends, my parents, some family and my partner are the biggest support system to me. They may not truly understand all the ins and outs of fibromyalgia but they know that I am still June and that if I could do something one day, it doesn't mean I can do it the next day and when I cancel plans at short notice, they say that's fine and rest up. To have these people in my life makes me feel loved and understood.