I didn’t look as though I had a disability, yet I knew something was terribly wrong.
I visited neurologists, endocrinologists, and ophthalmologists. I requested CT scans and further tests.
“Nothing is wrong,” the doctors told me. “It’s all in your head.”
I was a teenager, young and vibrant with my whole life ahead of me, and I was headed toward a crisis situation. I was less than 100 pounds, I was experiencing extreme fatigue, double vision often, my speech would slur unexpectedly and without warning. And there was nothing I could do. That was over 30 years ago.
I continued to see many doctors, explaining my symptoms and seeking answers, and reaching many dead ends. It wasn’t until I collapsed at work one day that I was taken seriously. A physician’s assistant finally provided an accurate diagnosis at the age of 19 – myasthenia gravis, also known as MG.
Myasthenia gravis, meaning “grave muscle weakness.” It is a rare autoimmune, neuromuscular disease that can affect a person’s ability to see, smile, walk, talk and breathe.
It had a name, it wasn’t in my head, it was real! It took almost two years to receive the diagnosis, and I found peace of mind knowing what was happening in my body. Now, it was up to me to remain positive and not allow MG to take over my day-to-day happiness. Throughout my twenties, thirties and into my forties I had a full time job as a legal assistant and enjoyed a very full life.
I struggled as a young adult to find a balance between work and play and found myself learning to rest a lot and to follow my doctor's instructions in taking medicines to help my muscles. As a result of MG, I experience drooping eyelids, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in my arms and legs, chronic muscle fatigue and sometimes difficulty breathing.
Although managing MG can be challenging, I’m finding success by following a treatment plan that works for my life. I spend my days helping others at my church and various other charities and spending time with family and friends. I participate in patient support group activities and work to raise both money and awareness of MG through community programs, and advocacy.
I continue to work toward improving my health every day, but sometimes battle with the side effects of treatment. People with MG are as smart, capable, interesting and sensitive as any able-bodied person. Like snowflakes no two MG patients are alike. With proper treatment we can all live fulfilling lives despite MG. I want to make a difference and have a positive impact on the world.
I don’t want this disease to define me. I have myasthenia gravis, it doesn’t have me!
Patricia Fife lives in Durham. She is a member of the Myasthenia Gravis Foundation of America, an organization committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to patients with myasthenia gravis through research, education, community programs, and advocacy.