Guest post by Dawn Smith
The worst feeling in the world is not being believed when you tell someone what you’re going through, how you feel, and that you need help. This theme has been present throughout my medical history.
It began at the age of roughly 14, when I went to my GP with widespread pain, joint pain, unrelenting fatigue, sleepiness, post-exertional malaise and a whole host of other issues. While discussing this, my GP asked me about my periods. When I told him that they were quite heavy, lasted for much longer than they should and intensified my other pains, he immediately jumped on it. He completely dismissed my other issues and only focused on the menstrual side, despite having prior medical conditions.
Even after treatment for the menstrual issues, my other symptoms remained, and they only intensified after that point. Since then, each time I brought up the same issues with many different doctors, it was brushed off, despite my issues getting worse and more symptoms appearing.
I went to doctors every month for about three years, begging them to find out why I was feeling the way I was – unnatural pain all over my body, stiffness, fatigue, inability to participate in normal activities, and an overwhelming need to excessively sleep after said activities. I was always told things like: “it’s temporary, it’ll pass”, “it can’t be that bad”, or “have you tried this/that/the other?” Doctors suggested: “maybe you need to lose weight”, “maybe its your birth control”, and even “have you tried being positive?”
In 2011, I had enough. I decided to do my own research and, after months of digging, the only plausible explanation was myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) with Fibromyalgia. I brought it to my GP (who I had been to several times previously about the same issues), who flatly refused to entertain the thought.
Even when presented with sheets and sheets of research, doctors refused to take me seriously until I stood up for myself and demanded to be seen by an expert. Thanks to my persistence I eventually got a referral to a rheumatologist, who promptly confirmed both conditions with blood tests to exclude other conditions, a sleep and activity diary and trigger point tests.
I could have been spared years of shame, going back to GPs again and again, and being made to feel like I was going mad, or I was overreacting. I felt like, because I was a young girl, I wasn’t believed; that they assumed either I was making it up or being hysterical. Women – and men – need to be believed when they talk about their health. For some, even asking for help in the first place is extremely hard to do, and for a doctor to disregard them is soul crushing.
I am now housebound, only leaving my home for hospital and doctor visits. Even now, with visible problems, I still have to fight to be believed. I’ve also found that its not just medical professionals who don’t take fibromyalgia and ME/CFS seriously. Fibromyalgia has become a sort of term for those who are a little bit achy and use it as an excuse for various things, while ME/CFS is seen as just laziness when, in reality, that couldn’t be further from the truth.