What Hurts More? Fibromyalgia, or have to explain and justify? Real Case

I have suffered from fibromyalgia for six years.To this day I’m not sure what is more difficult:Constant pain, fatigue, and myriad other symptoms that come with the diagnosis or, the constant need to explain and justify.

In 2010, when I was diagnosed, it was due to the elimination process.I did several tests and explorations without any conclusion, and one day I asked my GP if I could have fibromyalgia, after having read about the topic online.Internet self-diagnosis is the only thing that all doctors recommend not doing, but here, it was happening.I was referred to a rheumatologist who confirmed my diagnosis after completing the sensitive points test, and for a moment I felt relief …But that consultation became one of many frustrating conversations with doctors who did not believe, or did not understand my pain.There was a rheumatologist, who did not have any clinical psychology training, he asked me the most cliché question of all of them:“So …” he told me, “tell me about your childhood.”Have you got along well with your parents?However, five years later, I am furious with myself for not having challenged him.I should have asked him why he was launching popular psychology against me, but instead I told him about my childhood.He suggested that I undergo a series of sessions with a psychologist and did not ask why, I just nodded, and I cried.I asked him about the pain treatment and how to deal with it, but he said that talking to the psychologist should help me with that.That experience was the first time I felt such a lack of understanding, and every time it happens it breaks my heart again.But they are not just medical professionals.When my friend was diagnosed with multiple sclerosis (MS), a couple of years later, I felt jealous.Can you believe it?I never told her-or admitted it to anyone-but seeing her receive cards and flowers from all our friends, during the first weeks of her diagnosis, it made me realize how little my friends understood fibromyalgia.She had appointments with numerous doctors and nurses, all of them as part of her “support network”.I had not heard from anyone after that appointment with the rheumatologist – unless the psychologist told me, who discharged me after three sessions – because he could not “see any signs of trauma”.I did not have that network of friends, relatives or doctors.In fact, at that moment, I was struggling to get my own GP, ​​to understand my pain.If you suffer from fibromyalgia, then I am sure that your path to the diagnosis was as horrible, and complicated as mine.I have not yet heard of a sick man who has found understanding, belief, and goodness, from beginning to end.I find it really disconcerting that so many people can be so wrong, and yet the lack of support, and the unwillingness to understand, is all a fact.My occupational health advisor, at work, told me: “Fibromyalgia is the condition in vogue, -in the nineties everyone claimed to have it-,” and my consultant at the pain clinic said: “Many fibromyalgia patients come here crying and in pajamas. “You seem fine.I will never understand why comments like these are acceptable, especially from professionals in the health sector.

However, not everything is bad.As the years went by, I’ve been very lucky.My support network may not have existed at the beginning, but it has grown, as I have become more open about my condition.I talk about it at work, I write on my blog about this, in my free time, and I make connections through social media with other patients with fibromyalgia.My boyfriend is very supportive and has never questioned the validity of my pain.His father has lived with MS for more than 30 years, so he understands very well the difficulties that are associated with chronic pain, and invisible diseases.But, unfortunately, I have read many experiences in fibromyalgia forums, where patients talk about their lack of family support, or lack of understanding in their social circle, that’s why blogs, and social networks are so important !.They remind us that we are not alone.There are more than 5 million fibromyalgia sufferers in the United States, and millions more throughout the world, and I like to think that as our voices become stronger, and we become more powerful, we will raise awareness, encourage Research, education, and understanding about fibromyalgia will increase.As research develops, clinical trials will be conducted, and who knows, maybe one day there will be a cure.In my life, I would like to get to see that our diagnosis means something.I want people to respond with understanding and sympathy when someone tells them:

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