by Sarah Borien
I suffered from fibromyalgia for six years. To this day, I am not sure what is most difficult for me; constant pain, fatigue and a myriad of other symptoms that accompany the diagnosis, or the constant need to explain and justify it.
In 2010, when I was diagnosed, it was by elimination process. I had several tests and exams without conclusion, and one day I asked my GP if I could have fibromyalgia after reading it online.
I am sure that the self-diagnosis on the Internet is what all doctors advise to do, but here it was. I was referred to a rheumatologist who confirmed my diagnosis after passing the pain test, and for a moment I felt relief.
But this appointment became one of many frustrating conversations with doctors who did not believe or understand my pain. This rheumatologist, who had no clinical psychology training in his name, asked me the most cliché question of all.
“Then,” he said, “tell me about your childhood. Have you heard about your parents?
However, five years later, I am furious with myself for not challenging him. I should have asked him why he was releasing Pop Psychology 101, but instead I told him about my childhood.
He suggested that I have a series of sessions with a psychologist and I didn’t ask why, I just nodded and cried. I asked him about the treatment of pain and how to deal with it, but he said talking to the psychologist should help.
This experience was the first time I felt such a lack of understanding, and each time it was as heartbreaking as the previous one.
But they are not just health professionals. When my friend was diagnosed with multiple sclerosis a few years later, I felt jealous. You can believe that?
I never told her, nor confessed to anyone, but when I saw her receive cards and flowers from all our friends during the first weeks of her diagnosis, I realized how few really understood fibromyalgia.
He had an appointment with many doctors and nurses, all there as part of his “support network.” I had not heard from anyone after this appointment with the rheumatologist, unless I had the psychologist who discharged me after three sessions because I could not “see signs of trauma.”
He had no such network of friends, family or doctors. In fact, at that time, I was having trouble getting my GP to understand the pain I was in.
If you suffer from fibromyalgia, I am sure that your path to diagnosis was as horrible and complicated as mine. I have not heard from anyone who has been received with understanding, belief and kindness from beginning to end.
I find it really disconcerting that so many people may be so sick, and yet the lack of support and the lack of willingness to understand are only a fact.
My occupational health consultant told me: “Fibromyalgia is the fashion state of the 90s; In the 90s, everyone said they had ME ”and my consultant at the pain clinic said:“ Many patients with fibromyalgia come here with tears and pajamas: it seems that you are well.
I will never understand why comments like these are acceptable, especially from health professionals.
However, not everything is bad. Over the years, I have been lucky enough. It is possible that my support network did not exist at the beginning, but it grew as I became more frank about my condition. I speak it at work, I blogged it in my spare time and I make connections in social networks with other fibromyalgia patients.
My boyfriend is a great support and never questioned the validity of my pain; His father has been living with me for over 30 years and understands the challenges of chronic pain and invisible diseases.
But, unfortunately, I have read many discussions about fibromyalgia forums where patients talk about their lack of family support or lack of understanding in their social circle, which is why blogs and social networks are so important. They remind us that we are not alone.
There are more than 5 million people suffering from fibromyalgia in the United States and millions more around the world and I believe that our voices will become stronger and we will become stronger, we will create awareness, we will promote research and education and understanding of Fibromyalgia will increase.
As the research develops, clinical trials will be conducted and who knows, maybe one day there will be a cure. In my life, however, I would like to see that our diagnosis means something.
I want people to respond with understanding and sympathy when someone tells them: “I have fibromyalgia.