Today I’m taking part in the ‘Your Fibro Questions Answered’ project by the Fibro Bloggers Directory. A thank you to Terri for helping me get involved in this after I saw her getting involved, too. I’ve written this post in a bit of a foggy haze with flu & my big grumpy pants on, so I hope it makes some kind of sense. Please note that my answer here is my own opinion and is not medical advice, nor do I in any way wish to tell people what to do; these are merely my thoughts and suggestions from my own perspective. The question I’m answering today is :
“Why does my friend keep telling me that it’s not real and what should I say to her?”
Fibromyalgia is a so-called ‘invisible illness’, meaning it can’t be seen and often those with it will look ‘fine’. There’s still a lot of stigma and ignorance around invisible illnesses and disabilities, but with fibromyalgia there’s an added layer of complications. Unlike conditions that can be tested with blood tests and scans and such, fibro can’t. It’s sometimes referred to as a ‘modern disease’ but its roots go back to 1987 as a cause of illness recognised by the American Medical Association. In 1976, it was referred to as ‘fibromyalgia’ and since then more research has been undertaken and awareness raised over the condition. It still remains an under-researched area of illness, with ignorance still prevalent within the medical profession and socially despite moves towards a greater appreciation for how drastically it can effect the lives of sufferers. Bloggers, charities and even celebrities, like Lady Gaga, are helping to push for more awareness over what this condition is, that it’s real, and just how hard it can be to live with.
There’s a lot of doubt and scepticism from doctors and specialists who don’t appreciate the depths of fibromyalgia, that’s it’s not simply an umbrella term to classify ‘being a bit tired’ or ‘having a little pain here and there’. It’s no surprise that if even the medical world are slow at catching up that society can be harsh in its compassion towards fibromyalgia. It can’t be seen. It can’t show up on a blood test or an x-ray. For some people, that means it doesn’t exist, even if you and I know that it does. Even if those who deal with fibromyalgia every day know just how real it really is.
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There will always be people who don’t understand. Trying to argue the point can be hard with someone who says it’s not real. I think there are two ways of going about it.
Firstly, you can try to educate your friend a little and tell them that it’s medically recognised as a condition, show him/her some of the literature online from reputable medical sources, tell them how anyone can be affected by fibromyalgia (celebrities included) and that it’s a long term condition that’s hard to diagnose with lots of potential symptoms that can overlap other illnesses. Explain that lack of knowledge is gradually being addressed through more research but that there’s no treatment, it’s sadly a case of learning to manage the symptoms and your life in a way that minimises the impact of the symptoms.
The second route would probably be a little more blunt. Explain that there are many illnesses that cannot be seen but it doesn’t mean they don’t exist. You don’t see the air you breathe, but that doesn’t mean it’s not there. We know our bodies better than anyone else and how we feel; we’re stronger for dealing with something as challenging as fibromyalgia can be, and wouldn’t wish it on our worst enemies. It’s hard enough without having to deal with ignorance, and you don’t need your friend to believe you have whatever you’ve been officially diagnosed with. It’s not their business, and you don’t need the extra stress of caring what others think.
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Nobody can truly, fully understand what someone’s been through unless they’ve experienced it for themselves. I can understand the scepticism over fibromyalgia and whether it’s a ‘real thing’ in its own right. However, this opinion and lack of understanding shouldn’t be used to hurt or embarrass or belittle someone else. It depends on the extent that this person’s opinion affects your relationship.
You are not your illness, whether that’s fibromyalgia or any other illness. It may be possible to keep that part separate from your friendship to a degree. But if what their thoughts negatively impact how they treat you and they say things to make you feel worse, then please remember that you’re worth more than that and you don’t have to put up with that sort of behaviour from anyone, let alone someone who should be a friend. That’s not what friends do.
You could discuss the symptoms you struggle with and how they affect your life. But it’s up to you who you tell about your health conditions, and up to you how much or how little depth you go in to. Don’t feel pressured if you’re not comfortable talking about it.
When it comes to what to do, it depends in the specific set of circumstances. It’s a case of choosing your battles, and spending your limited energy, wisely.
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What would I personally do? I’d suggest they read up on the condition before making an ignorance judgement that can be very hurtful. I’d explain a little, briefly, about fibromyalgia and the invisible illness side of things, to try to help them understand and see a different perspective. If that doesn’t help, I’d also let them know that I don’t need their seal of approval over what medical conditions I’ve been diagnosed with. I know how my body feels and that’s enough validation for me.
Further thoughts :
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How would you deal with a situation like this? Or have you had to deal with this before?