The social stigma of fibromyalgia is a hardship that all sufferers have to endure. It can come from doctors, coworkers, well-meaning friends and family. These people base their understanding on outdated medical information, stereotypes and an inability to see our pain. We are told we are lazy, over sensitive, weak, fakers, complainers, attention seekers and emotional. We are told that we should try harder, exercise more and improve our diets; that all of our symptoms are rooted in something we are doing wrong.
To say that fibromyalgia is not real, is completely outdated and ignorant. Historically a woman’s disease, it was originally labeled as an emotional disorder. You can still find this stigma hiding between the lines, implied all over the internet. It is 2016, this thought process is so insulting and demeaning that I want to get on a soap-box, but I won’t.
Instead, I’ll just write about how this stigma affects those of us living with fibromyalgia.
Friends and Family
The stigma creates a lot of judgment, criticism and doubt, both from ourselves and from the people in our circle. Many choose to keep silent about their diagnosis and pain. Others end up avoiding people who mock their illness or regularly criticize. When you add a lack of support to an already pained, depressed and anxious mind, the stigma forces some of us into isolation. I’ve heard people say they wish they had some other disease just so they could be treated with compassion and not spite. I can completely relate to this. It seems as though people know how to support the more visible or common illnesses, but the invisible and chronic require more understanding. This phantom syndrome in particular, is hard for people because of the stigma.
Many doctors still do not acknowledge fibromyalgia as a legitimate disease, so if you go to the emergency room or a new doctor and tell them you have fibromyalgia, you may be treated differently because of it. Doctors don’t realize that their usual treatment for something, may be more harmful than good to the fibro patient. When you advocate for yourself, you become one of ‘those’ patients who thinks they know everything and are quickly written off. The medical community also thinks people who express pain, are pain medication seekers. Whether you ask for it or not, you are labeled. And when you decline medication, you are treated as some ungrateful faker, like “why are you here then?” It really is bizarre. I have very little faith left in the medical community because of the labels they have placed on me over the years.
In 2015, the International Statistical Classification of Disease and Related Health Problems (ICD) designated a diagnostic code for fibromyalgia (ICD-M79.7). Hopefully this classification will assist in legitimatizing the disease within the medical community.
When you doubt your diagnosis, you spend energy searching for a cause instead of finding ways to help your condition. Learning to manage your symptoms is the key to improving your life. When you are able to accept your diagnosis and learn to adjust to your new normal, you naturally go through a period of grieving. This emotional transition can take time, years even, because of the way flares come and go. The longer you deny or don’t accept your diagnosis, the longer this process will take. Grieving the loss of your former self is an intense and important part of moving forward with fibromyalgia.
When I was first told I “probably have fibromyalgia”, the doctor literally shrugged his shoulders at me and handed me an antidepressant. When I looked it up, I found that the common consensus was that it wasn’t a real thing. I felt embarrassed, ashamed even, maybe these ailments really were in my head. I started taking the antidepressant and forgot all about this so called fibromyalgia. A few years later, after quitting the medication, my health started to decline. The word fibromyalgia didn’t enter my thoughts, I had blocked it out. Eventually, as each new symptom appeared, the word kept popping up on my internet searches. I read that there wasn’t much they could do for it and I was terrified of being dismissed by another doctor, so I didn’t go. But the pain began to scare me, so I skipped the general practitioner and I went directly to a rheumatologist. She didn’t dismiss me. She told me a lot had changed since 2005 and that she believed my pain was real. Her treatment plan didn’t help the pain, but her acknowledgement changed my response to it and this has helped me move forward.
The many symptoms of fibromyalgia are real and we are more likely faking our wellness than our illness, to put you at ease. We are not seeking sympathy, just understanding. When I talk about support, I mean, don’t take it personally when I have to cancel plans, or can’t travel far to visit you. Don’t criticize or compare, I am doing the best I can. But most importantly, don’t buy in to the stigma. If you care about someone with fibromyalgia, educate yourself, it is the single most important thing you can do for them.
I hope you all have a lovely week!