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Coping With a Lack of Understanding
I’ve suffered from fibromyalgia for six years. To this day I’m not sure what I find hardest; the constant pain, fatigue and myriad of other symptoms that come with the diagnosis, or the constant need to explain and justify it.
In 2010 when I was diagnosed, it was by process of elimination. I’d had various tests and scans with no conclusion, and one day I asked my GP if I might have fibromyalgia, having read about it online.
I’m sure self-diagnosis on the internet is the one thing all GPs advise against doing but here, it was happening. I was referred to a rheumatologist who confirmed my diagnosis after completing the tender point test, and for a moment I felt relief.
But that appointment became one of many frustrating conversations with medics who didn’t believe or didn’t understand my pain. That rheumatologist, who had no clinical psychology training to his name, asked me the most clichéd question of them all.
“So,” he said, “tell me about your childhood. Did you get on with your parents?”
Still, five years on, I’m furious with myself for not challenging him. I should have asked him why he was throwing Pop Psychology 101 at me, but instead I told him about my childhood.
He suggested that I undergo a series of sessions with a psychologist and I didn’t ask why, I just nodded and cried. I asked about treatment for the pain and how to cope with it, but he said talking with the psychologist should help with that.
That experience was the first time I felt such a strong lack of understanding, and each time is as heartbreaking as the last.
But it’s not just medical professionals. When my friend was diagnosed with multiple sclerosis a couple of years later, I felt jealous. Can you believe that?
I never told her – or admitted it to anyone, but watching her receive cards and flowers from all of our friends during those first few weeks of her diagnosis made me realize how few of my friends really understood fibromyalgia.
For all the pain I felt each day, the worst was the pain in my heart — an overwhelming guilt over not being able to take care of my child and my home.
She had appointments with numerous doctors and nurses, all there as part of her ‘support network.’ I hadn’t heard from anyone after that appointment with the rheumatologist – unless you count the psychologist who discharged me after three sessions as he could “see no sign of trauma.”
I had no such network from friends, family or medics. In fact, at that point, I was struggling to get my own GP to understand the pain I was in.
If you suffer from fibromyalgia then I’m sure your path to diagnosis was as awful and complicated as mine was. I have yet to hear of a sufferer who has been met with understanding, belief and kindness from beginning to end.
I find it truly baffling that so many people can be so unwell and yet the lack of support and lack of willingness to understand is just a given.
My occupational health advisor at work told me, “Fibromyalgia is the in vogue condition of the noughties – in the nineties everyone claimed to have ME,” and my consultant at the pain clinic said, “Many fibromyalgia patients come here crying and in their pyjamas – you seem to be doing okay.”
I will never understand why comments like these are acceptable, especially from professionals in the health sector.
Still, it’s not all bad. As the years have gone on, I’ve been pretty lucky. My support network may not have existed at the start but it has grown as I have become more outspoken about my condition. I talk about it at work, I blog about it in my spare time and I make connections through social media with other fibromyalgia patients.
My boyfriend is a great support and has never questioned the validity of my pain; his father has lived with ME for over 30 years so he understands all too well the difficulties that are associated with chronic pain and invisible illnesses.
But, sadly, I have read many discussions on fibromyalgia forums where patients talk about their lack of family support or the lack of understanding in their social circle, which is why blogs and social networks are so important. They remind us that we’re not alone.
There are over 5 million fibromyalgia sufferers in the U.S. and millions more across the world and I like to think that as our voices become stronger and we become louder, we will raise awareness, encourage research and education, and the understanding of fibromyalgia will grow.
As research develops, clinical trials will take place and who knows, maybe one day there will be a cure. In my lifetime though, I’d just like to see our diagnosis mean something.
I want people to respond with understanding and sympathy when someone tells them, “I have fibromyalgia.”