Receiving a diagnosis for a rare disease takes an average of 4.8 years, according to one study. That means almost five years of daily struggles with an unknown cause. It means being doubted by doctors and subjected to countless tests, and having constant feelings of insecurity. Without answers, it’s easy to believe that perhaps you are making it all up.
When I first started having symptoms of myasthenia gravis in 2004, I had no idea what was happening to my body. I felt as if my cheeks were numb, and trying to smile was difficult. I started to slur my words, and swallowing food became nearly impossible. By the time I finally received my diagnosis, I was surviving on a quarter of a jar of baby food a day and was mopping up my saliva because it was difficult to swallow.
My mum brought me to the doctor, and after a thorough checkup, he proclaimed that I had globus hystericus. He concluded that the “lump in my throat” was in my mind. He thought I was looking for attention and wasn’t really sick.
As we walked out of the clinic, I could see the disappointment in my mum’s eyes. She made an appointment with a psychologist later that afternoon, and I battled through many sessions with him as I tried to make him believe that I wasn’t making up my symptoms.
I heard my mum crying on the phone to family members about my diagnosis. She didn’t understand why it was happening. She wondered if I felt that I wasn’t getting enough love or was desperate for attention. I was an awkward teenager at an all-girls school, so looking back, I can understand my family’s stress and concern.
After a few weeks, the psychologist called my mum and told her that he believed me and thought there was something more sinister and dangerous going on. He advised us to return to the doctor, who still thought my symptoms were psychosomatic — that they were caused by a mental factor such as internal conflict or stress.
This time, however, the doctor listened to us and called a local neurologist. She was fully booked for the next few months, but when he explained the severity of my condition and that my weight had dropped to 80 pounds, she fit us in for an early morning appointment.
The neurologist diagnosed me within 15 minutes, telling us that if we had left it much longer I could have died. Inside I was breaking as I was told what my new life would be, but I also felt a massive sense of relief that I finally had a name for what was going on in my body.
Years later, the trauma of being doubted by doctors and my family still affects me. I have huge self-doubt and often don’t trust my own thoughts. Seeing a life coach has helped to release the pain that I had been carrying around, but it has taken over 16 years of fighting through it to recognize the cause of my self-doubt and emotional pain.
In honor of Rare Disease Day on Feb. 29, I want to reach out to healthcare professionals to ask them to be more aware of the effects their words have on patients and the emotional pain they can cause. I’d like to ask them to be kind and to listen to their patients rather than assuming that their symptoms are made up or a cry for attention.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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