Weakness is not something most people are extremely open about. We tend to hide any sign of weakness or imperfection from the public eye. We choose to keep weaknesses personal — unless you become chronically ill, especially with a disease notorious for causing extreme muscle weakness.
That tiny bit of dignity that held together things you chose to hide from the world is now shared with doctors, family members, strangers from the internet, and hospital roommates you have not yet met. You might hear another 20-something-year-old who is also on prednisone tell you about the unseemly stretch marks she has gotten. When she says it bothers her, too, the empathy might make you feel better. Even if she comes from a different continent than you. Online support groups are amazing for dealing with our weaknesses together, with people who understand better than most.
We later realize that we are not the only ones who have weaknesses. The very doctor who is currently treating you has his own weaknesses, and you might just be the one patient that elicits that weakness. That one disease they hoped would not be included in their exam and they “will read through it later.” They never did read through it. This often happens when you are suffering from a rare disease. If I have to spell “myasthenia gravis” to an emergency room clinician during one more myasthenic crisis, I might just really lose it. You unintentionally become a lot of medical personnel’s weakness — often, it is a weakness they never even knew they had.
It can become quite overwhelming when your very existence frustrates most of the people you are hoping will help you. I believe it to be of the utmost importance that we remember that this is because of their weaknesses, not ours. We are facing our weakness every day. We are standing up to our weaknesses by seeking out medical help, and we cannot stop until we find someone willing to stand up for us, too. We may be physically weak, but to endure everything we have to endure just to survive, we gain strength. Our weakness forces us to embrace our inner strength.
In my case, it was a strength I never knew I could be capable of. I do not regret falling ill because it forced me to elicit inner strength I had only ever dreamed of. Find your own strength and fight for it. Life is beautiful, never stop fighting.
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.