My experience with having fibromyalgia is that I am often not taken very seriously. It took me a long time to be diagnosed, and my pain and negative symptoms were often brushed off as not being serious when other diagnoses didn’t fit. Being invalidated has caused me to suffer through my symptoms longer than I should have. It is because of this that I am now very vocal about my experience with fibromyalgia and experiences testing out the different treatments that are available to help my symptoms.
With that being said, if I were invited to speak at a medical school about fibromyalgia, I would mainly like to discuss the seriousness of the illness. So many times, fibromyalgia is downplayed, even though it impacts every aspect of an individual’s life. I would urge medical students to look more into the illness and how it affects an individual’s ability to function on a daily basis. So many of us struggle with little understanding from professionals and it can often be difficult to find adequate medical care. I would highlight the importance of treating fibromyalgia as the serious illness that it is to increase the quality of life of those who live with it.
I would want to tell medical students my personal story of living with fibromyalgia and how it has limited my life and my ability to pursue many things. I would want students to realize how much the weather and temperatures greatly impact how I am able to function on a daily basis, and how I end up spending most of my time trying to figure out how to manage my symptoms. Telling medical students about the severity of my symptoms would make me feel as though I was being heard. I find that telling my story helps others to understand the condition better than any medical book ever could.
I would want medical students to know that when it is summer, I spend most of my time inside in the AC because heat causes my symptoms to flare up. I can’t go outside and enjoy the sunshine because the heat often ends up making me feel like I have the flu. I would also want medical students to know that when it is winter, the cold causes my body to ache as though it is being torn apart muscle by muscle. No matter the temperature, I am easily impacted by hot and cold temperatures, and this limits a lot that I can do with my life. I often feel like I am chasing my symptoms and anticipating circumstances that may make my symptoms worse.
But most of all I would want medical students to understand how fickle fibromyalgia is, and how small environmental changes can deeply impact how my symptoms react on a daily basis. I would want medical students to understand that there aren’t a lot of medical treatments available for those with fibromyalgia, and as someone with multiple mental illnesses, and as someone who is on various mental health medications, I am unable to take certain medications approved for fibromyalgia because of the interactions that would occur with the other medications that I am on. Most of the time I must manage my symptoms on my own using techniques such as using cooling towels in the summer, and heating pads in the winter, while also trying to use gentle movement and dietary changes along with herbal supplements to manage pain. I would also want to highlight how fatigue and brain fog are big parts of my illness and require me to pursue a lot of rest.
Living with fibromyalgia is not easy, and if I could talk to medical students, I would want to highlight the various aspects of the illness that severely limit what I am able to do with my life on a daily basis. I would want to highlight how severe this illness is, and how it impacts every aspect of my life. It is about time we take fibromyalgia seriously, and I hope that medical students can hear real-life stories from those living with the illness to create more empathy for those of us struggling on a daily basis.
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