We express ourselves in many ways: through our hairstyle, our clothing, our facial gestures, our voice, and how we choose to articulate our thoughts. One symptom of myasthenia gravis is dysphonia, which results in an unreliable and fading quality of voice. Another symptom is having difficulty with speech, which can sound like drunken slurring.
Before my diagnosis, I wanted to pursue a career in speech therapy. I didn’t know how myasthenia gravis could be affecting my voice, because I only developed noticeable bulbar symptoms after starting university. Initially, my main concerns were my difficulty with breathing and weak arms and legs. I did not even think about the quality of my voice until we discussed the effect of myasthenia gravis on voice in our academic modules.
Suddenly, I became very aware of my voice, and I realized that my symptoms were not isolated to my larger extremities. At first, this realization left me feeling angsty about how effective I was at monitoring my symptoms. I felt that my health was completely out of my control.
Eventually, I abandoned the self-pity and anxiety-driven thoughts that were preventing me from thinking logically about the situation. The varying quality of my voice was not a new symptom. I found that being aware of the change in the quality of my voice and articulation was a way to monitor my symptoms. After all, these are not new symptoms; they are merely clues that my body gives me to solve the ongoing mystery of “how much can my body do today?”
I learned that when I was feeling short of breath, I could avoid speaking in long sentences. When I was able to speak in longer sentences, I would know that my breathing had improved. If I could not speak at a normal loudness and people had difficulty understanding me against background noise, I knew that I would have to take it easy that day. I realized my voice symptoms could be used as tools to help me to stay in control of my health. I saw an opportunity to empower myself and become an educated patient.
It is important never to lose your inner voice, even when you are not physically able to speak. Never stop fighting. Life is too beautiful.
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