My Pain Is Just as Real as My Myasthenia Gravis
Pain is a big part of my life. I have been in daily pain for the last 10 years. The only medical reason I have for it is myasthenia gravis (MG).
I highly value science. When I was diagnosed in 2013, there was still little evidence online that pain was part of MG. Many doctors also dismissed this reality. But my pain still demanded to be felt, even if it wasn’t being acknowledged.
My pain levels directly correlate to my level of MG weakness. The worse my MG, the higher my pain levels. The parts of my body that hurt most are my weakest areas, or the ones connected to them. For example, my neck is one of my weakest spots, but my pain isn’t limited to my neck. My whole back and shoulders are also often affected.
Chronic pain is an underrated impairer. It does not only limit movement but can also result in cognitive deficits commonly referred to as brain fog. This means I have difficulty with things like word-finding, memory, attention, and task organization. If only I made money every time I lost my train of thought mid-sentence.
Pain also has an immense effect on my mood. I would say that I have a high pain threshold, but I mentally break when there is no break from the pain. Unfortunately, the ones closest to me usually suffer because of this.
Lastly, it results in isolation. I have canceled many plans because I was unwilling to sit through a fancy dinner. Some days, I can’t just smile through the pain. Some days, I just have to lie in bed and cry.
Sometimes, I feel like pain is my worst symptom of MG. Until recently, there was limited research about the presence of pain in the disease. In other words, many of those with MG had their pain dismissed.
MG limits my movement, affects my cognitive function, impacts my emotions, and results in isolation. Yet pain is often seen as a symptom or side effect while MG is a disease on its own. This is just another reminder that categories do not determine magnitude.
I sometimes still believe my pain is psychogenic because I was dismissed so many times by different people. However, I am actively working on unlearning this.
I am trying to believe myself above what others perceive as my reality. After all, I am the only person experiencing life in my body. No one else knows what you’re going through but you. Remember that.
Life is beautiful. Never stop fighting.
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