I like to compare myself to a marshmallow. I’m gooey and squidgy on the inside and on the outside – pretty much the same. I don’t have a thick skin, so like a marshmallow my exterior is only slightly more resistant than the inside. Oh and in the sun I go pretty pink.
I’ve always been a sensitive soul, I take things to heart. Even things from people I completely despise cut deep. Being young with an invisible illness, I need to develop a thicker skin, thicker than most people. People are quick to judge others, especially if you don’t ‘look’ disabled.
The truth is, most of us with invisible illnesses become pretty good liars. We hide the pain from the outside world. Like Elsa we “conceal don’t feel” (if only I underwent a glamorous transformation every time I had a flare up.) It’s not easy to hide the pain, it’s for the benefit of others mostly. People don’t like seeing others in pain – understandably so.
However not being visably in pain, causes others to doubt my credibility. I’m seen as a hypochondriac “there’s always something wrong.” People get fed up of me cancelling plans or not being able to do everything an able bodied person can. Yes there’s “always something wrong” it’s called Fibromyalgia, it’s always there and will always be there. Also, if my condition is annoying to you, imagine how annoying it is to me.
I’ll be the first to admit I’m pretty accident prone. If there’s an object near me, you can guarantee I’ll walk into it or trip over it. On top of the symptoms of fibromyalgia I’m usually covered in bruises and potentially limping. I’ve always been clumsy, although it’s a symptom of fibro, I think it’s just a symptom of being me.
You can’t argue with a black eye, an arm in cast or a missing limb. You can argue against generalised pain, anxiety, nausea, fatigue, headaches and pretty much all the symptoms of fibromyalgia. Just because you can, doesn’t mean you should.
I recently used a mobility scooter for the first time in a supermarket. My body was fatigued, my feet turned inward and I started waddling like a duck – a tell tale sign that my body has had enough. I thought about using a wheelchair but my body was too fatigue to self-propell. I’m well aware of the stereotype of a mobility scooter user. It’s assumed that you’re either lazy or too fat to walk or both. They think of the people in Wall-E flying around in futuristic vehicles that are reminiscent of a mobility scooter.
As someone who is more Michelin man than Barbie girl I knew what people were going to think. Although no one said anything derogatory to me, I could feel their judgements. It seemed to me that people went out of their way to make it difficult to get around. A lot of it was probably paranoia, I felt self conscious using the scooter so I over analysed the body language of other shoppers. But at least some of it wasn’t my anxiety getting the better of me.
I love the phrase “those who mind don’t matter and those that matter don’t mind,”
and most of the time I’m surrounded by the people that ‘don’t mind’. But I still find myself caring deeply what the stranger I passed on the street thinks. My marshmallowy mind muses constantly on other people’s thoughts but really, why should I care? Do their doubts make my pain any less legitimate? No, then why do they matter so much to me?
It’s very difficult not to take it all to heart, I have tried not to care what others think but I just can’t seem to do it. So I am trying to shed the marshmallowness in favour of another of my favourite foods. Goodbye Miss Marshmallow, hello Tough Cookie!
Related: Ways to offer help to someone with chronic illness/Fibromyalgia
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