Life with an Invisible Illness

Seven months ago, I was diagnosed with a life-changing illness. No one can tell just by looking at me. No one can tell simply by talking to me. The only way another human being would know about my disorder is if I say it out loud. Unfortunately, this disorder is extremely misunderstood, wrongfully diagnosed, and often overlooked. For years, it was considered a mental illness due to the lack of diagnostic proof available. Many people still believe this, including some doctors. I was lucky enough to be under the care of a physician that took my symptoms seriously. He listened to my concerns and addressed each one to the best of his ability -- his name is Dr. Matthew B. Presson.

Everything was put into motion when I went in for a visit for some nerve pain in the left side of my jaw that was causing lightning headaches and dizziness. Other symptoms were also present, but I was most concerned with the jaw pain and headaches that I didn’t think to mention them. I was originally diagnosed with Trigeminal Neuralgia, a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. However, this diagnosis was questioned after the first MRI of my brain was normal. My doctor mentioned that it is possible to suffer from this even with a normal MRI, but it is less likely. From there, we went over my other symptoms and came up with a list of possible causes. I was experiencing numbness, neuropathy and weakness in my arms and legs, severe fatigue, nausea, dizziness, and increased heart rate.

In the months leading up to my diagnosis, Dr. Presson and I worked through blood tests, diagnostic imaging, and medications. My list of symptoms had continued to grow -- weakness in my hands specifically. I was constantly dropping things, struggling with my grasp, and I ended up leaving my job as a barista. At this point, Dr. Presson was convinced that I was showing all of the textbook signs of multiple sclerosis, or MS -- a disease in which the immune system eats away at the protective covering of nerves, causing many different symptoms, including vision loss, pain, fatigue, and impaired coordination. This theory was squashed when I had a second MRI done. Again, it was normal, aside from evidence of degenerative disc disease and slight spinal abnormalities. With every negative or normal result, I began losing hope in finding answers. But my doctor never gave up.

Finally, in August of 2019, after nearly a hundred different blood tests, two MRIs, x-rays, EKGs, and four medication trials, my doctor came to the conclusion that my symptoms could all be explained by one common illness. He had said that it wasn’t a diagnosis he liked to confirm, simply because there’s no cure and the available treatments don’t work for everyone. Not to mention the fact that many people believe this to be a mental illness. He was at a loss, and my state assistance insurance coverage was coming to an end the following day. We didn’t have the luxury of figuring out a treatment plan in the upcoming weeks or months. This was it, there was nothing else to be done.

On Thursday, August 29th, I was diagnosed with Fibromyalgia -- a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way one’s brain processes pain signals. Since then, I have had increased widespread pain, memory issues (also referred to as “fibro fog”), and consistent fatigue and nausea. In November, I had started a new job in the medical field. I was let go after four months.

Another downfall to having this disorder is the negative impact it has on my immune system. Working in the medical field with a weakened immune system is about as difficult as a plumber remaining clean on the job. I come down with a cold once or twice a month, sometimes more, and it’s not easy to deal with. My fatigue and sleep issues worsen, the widespread pain becomes amplified even more, and my appetite usually diminishes almost completely. I often take extra precautions in hopes of remaining somewhat healthy.

I have an invisible illness and am at greater risk for infection. My body can’t fight things off as well as someone in great health. On top of that, I am constantly experiencing pain and fatigue, some days worse than others, and my disorder is often seen as an excuse to be less of a person. I’m here to tell you that I am a great person, I’m unselfish and always think of others. Anxiety sprouting from the fear of losing those close to me due to this disorder cripples my mind on a daily basis. I am a mother and a wife, a daughter and a sister and a friend. My invisible illness does not discredit my love and compassion for the people I care for most. It does not make me less human than anyone else. I may have an invisible illness that can be debilitating on many occasions, but I am still a person, and I deserve to be treated as such.

Thank you, Dr. Presson, for giving me the answers I needed... even if it wasn't something either of us wanted to hear.