When I think back to being a teenager (which honestly wasn’t that long ago), my key memories involve friendships, school, relationships and living in pain. For most of my teenage years I was hurting.
As a fourteen year-old girl, most doctors didn’t believe me when I told them I was in pain. I was trying to seek help, only for my fibromyalgia to be dismissed as ‘growing pains’, or told that it was just fatigue and I needed more sleep. I wish that I was taken more seriously, as constantly being ignored by health professionals means I have to live with the fact that I am now a young woman that can’t enjoy particular activities. I can’t do too much strenuous exercise—I’m unable to go on hikes or long walks because by the end of it I am in so much pain that I can barely move. My twenties are meant to be the years that I explore and travel, but instead I must rest and make sure to plan ahead when I go out, because the next day I will most likely be bedridden and unable to move.
Photo by Yuris Alhumaydy on Unsplash.
It started with pain in my muscles—primarily in my legs and knees. ‘Growing pains’, I was told by every doctor I visited, but it kept getting worse. Some days I couldn’t leave my bed without feeling pain, leading me to stay at home rather than go to work, school or out with friends. One morning I woke up frozen in pain—I couldn’t move and just kept crying. I felt like my body was on fire, and my fiancé—who was my boyfriend at the time—had to carry me to the toilet, which was only a few feet from my bedroom, because I had no strength to move. I knew something was wrong, and that I had to go to the doctors.
In 2018 I saw my GP and he ran a lot of tests, but he had no satisfying answers for me. My inflammation levels were a little higher than average, though not high enough to be in the range for arthritis, so he diagnosed me with seronegative arthritis. Seronegative arthritis is diagnosed when a blood test doesn’t find certain antibodies in your body that typically make you qualify for rheumatoid arthritis.
My GP said that this was a Band-Aid diagnosis, or a ‘placement diagnosis’—he would still treat me as though I have seronegative arthritis even though this may not be my actual condition. The medication I was given honestly made me feel worse—I was tired all the time and still in pain. I questioned his diagnosis as the medication was making me feel sick, but he ordered me to stick with it and dismissed my concerns.
Photo by Christina Victoria Craft on Unsplash.
In 2020 I moved to a new GP because I felt like my concerns with having an incorrect diagnosis was doing more harm than good. I hated being on the medication I was given—it made me feel sluggish and fuzzy. I suspected that my old GP simply diagnosed me with seronegative arthritis so he could get me out of the doctor’s office as soon as possible.
I asked my new GP if we could investigate further into my diagnosis. We discovered that my previous GP didn’t even officially state in my file that I had seronegative arthritis—he had just labeled it as ‘chronic pain’. So, she ran even more tests in an attempt to find the source of my pain; physical tests, blood tests, and urine tests.
Talking openly with others who have had similar experiences made me feel heard and validated.
During this process, I stumbled across an Instagram post about fibromyalgia, a chronic pain syndrome that involves all my symptoms: widespread pain, headaches, sensitivity to the heat and to cold, difficulties with memory and concentration, and stiff joints and muscles in the mornings. I looked further into it; I read people’s stories on Instagram, Fibromyalgia Research Community and support groups on Facebook, and talked to people around me with fibromyalgia. I spoke to my friend’s mum, who warned me it would be a long process to discover whether or not I have fibromyalgia, as it took her years. My friend told me that his nan had been diagnosed with the condition and he was working on getting a diagnosis too. Talking openly with others who have had similar experiences made me feel heard and validated.
Post by @through.the.fibro.fog on Instagram.
I brought up the possibility of having fibromyalgia with my GP, and she said I most likely do as I had been experiencing all the symptoms. However, because it is a ‘last resort diagnosis’ she would only provide me with an informal diagnosis. She still gave me some treatment, such as antidepressants to dull the pain, but I wanted to be sure that I had the condition. This, however, proved to be complex. I would have to see a specialist to confirm my diagnosis, even though I most likely have it, and the official medical process to diagnose someone with fibromyalgia is a long haul—especially as I fall outside the common age range for women to be diagnosed with the condition, which is 45 years old.
The cause of fibromyalgia is unknown, but studies suggest that risk factors such as a trauma related injury or PTSD could increase the chance of developing it. My GP explained that this may be the reason I had developed it, as I have had many traumatic events happen to me from a very young age, leaving me with complex PTSD.
Illustration by Michelle D’urbano for NewScientist, https://www.newscientist.com/article/mg25033400-100-the-gender-pain-gap-has-gone-on-for-too-long-its-time-we-closed-it/.
As my fibromyalgia has been untreated for a very long time, I have been dealing with unaddressed chronic pain for years, which has had a lasting impact on my recovery. While fibromyalgia itself doesn’t become more painful over time, the symptoms can change and your mental health can decline from living in pain for so long. Earlier treatment could have prevented this, but the lack of research and support for those with fibromyalgia means that my health and wellbeing has been systematically neglected for years.
I am currently seeing a new GP, who has been an amazing help so far. I am now on the correct medication, as the medication I was previously on isn’t used to treat people with fibromyalgia anymore. I am still feeling pain, but with the new medication I hope that my pain and flare-ups will start to reduce. We are working on running some tests that my two previous GPs neglected to, and getting me in to see a specialist, as my previous GP brought this option up but never made a referral.
Women are told to toughen up, but I want this to end, I want to be taken seriously. I want my pain to be heard just like men’s pain. I want pain bias to end.
I hope that women start being treated seriously when it comes to their health. I want women to be provided with appropriate medical treatment instead of being ignored, dismissed and left in the dark like I was growing up. There are still so many cases of malpractice that happen to women every single day—of women being ignored and left to figure out what to do on their own. Women are told to toughen up, but I want this to end, I want to be taken seriously. I want my pain to be heard just like men’s pain. I want pain bias to end.
Susannah Mannie is a writer, poet, and a proud lutruwita/Tasmanian Aboriginal woman.
She is an avid reader and is currently studying a Bachelor of Arts majoring in English at Deakin University. Susannah is a co-host with a group of individuals for a radio show based in nipaluna/Hobart called This Way // That Way on Edge Radio that focuses on youth-led conversations about sexual and reproductive health, relationships, and culture. Susannah is passionate about spreading awareness for Fibromyalgia, a chronic pain condition that she was diagnosed with in 2020 after multiple misdiagnoses.