My Story: Why Finding a Specialist Who Recognizes Chronic Pain Is So Hard?
artwork by Lindsay Tempest
It took numerous phone calls to get an appointment with a hand specialist and when I finally was able to solidify a date, the specialist shrugged at me. He poked at my nerve endings and asked a few questions, but settled for, “I don’t see any physical evidence. I can’t help you.”
This would not be the first, or last time I would hear this phrase. I was poked, prodded, did every x-ray, nerve assessment, and blood test in the books that could potentially lead to some sort of answer. Each specialist I saw misunderstood my pain and often wrote it off as nothing more than stress.
It would be another four more years of tests and searching before I finally was able to meet two specialists that completely changed my ability to manage pain. It started with the recognition of chronic pain and fatigue, and has since been categorized as CFS (chronic fatigue syndrome).
My symptoms were slow to spread, starting in my wrists and slowly wriggling into every muscle tissue and body function. For a normal assessment at the doctor, the symptoms felt too confusing to see a treatment process, and quite honestly, some specialists were not interested in the long haul to problem solve with me to see a positive way forward.
Finding a specialist who recognizes chronic pain is hard because most people do not understand it. General doctors are trained to catch symptoms, but when your body does not show a clear signal, it is hard for them to notice what you need.
Looking for a specialist who has worked with chronic pain and fatigue helped me finally find specialists who understood the physical, and emotional, exhaustion of finding ways of managing chronic illness. The key with the best specialists I found was that they were willing to listen. They wanted to problem solve alongside me to seek solutions and try out new ways of understanding and treating pain.
The right specialists for me did not write me off as one more tired woman who came into the office. They saw me as a patient who was suffering from unusual symptoms at a young age, who was in desperate need of help. Together, we looked for solutions and daily routines to help me manage my chronic pain and to build a better, healthier life moving forward.
In today’s medical system, there is not a simple answer for pain. From fibromyalgia to chronic pain, the symptoms are not straightforward for doctors to easily see. The Flowly community is looking to change how we see, manage, and support chronic illness through the new resources feature.
Ask questions and learn from the experience of others all within the app. Sharing resources and medical studies can all help us further the knowledge around chronic illness and empower medical resources, and ourselves, to understand how to treat patients suffering from chronic pain and misdiagnoses.
You can be a part of that change all within Flowly by sharing your experience here.