What they don’t tell you…..
I gotta tell ya’, there are a lot of issues relating to Myasthenia Gravis (MG) no one prepares you for. I’m talking about the basics. They will tell you that it is rare and there is no cure, “but we have treatments.” They don’t tell you that the treatments do not work for everyone.
They don’t tell you that some days and some treatments will feel worse than the MG. They don’t tell you that some medications will create secondary lifelong problems. For example, long term “steroid therapy” (the 1st medication generally given) can create dental issues. Yet tooth pain is not commonly found in any literature as a potential side effect. It has been my experience that if a doctor has not heard of a side effect or symptom you are presenting, it is not related to MG. You will find yourself being easily dismissed.
They don’t tell you that during the course of trying to find a treatment that can keep you somewhat functional, you will have to weigh the risk factors: potential death or continued declining health. Yes, they will mention that difficulty breathing can be a serious symptom of MG, but they don’t tell you that extreme temperatures (hot or cold), talking and laughing can all add additional weakness to your body.
Double vision? Well now we have a problem. Is it from the steroids, the diabetes or the weakening and fatigue of the eye muscles? Due to your immune system being compromised from some of the medications you will not be able to deal with your dental issues until your blood sugar numbers are better regulated (while on blood sugar elevating steroids).
They don’t tell you, “we have created this mess, but you have to figure out how to get through it.” They don’t tell you that insurance companies will deny treatments that could possibly help, but approve medications that make Myasthenia Gravis symptoms worse.
They don’t tell you they are not very familiar with MG and therefore treat you like a textbook case. So, with everything they don’t tell you, you learn from first hand experience or through the voices of others struggling with this disease. They don’t tell you that your social network will change. That you will engage in self isolating before self isolating becomes a thing. Your everyday abilities waiver and over time that wavering becomes a slow and steady decline. Those declines become our new status quo.
Relying upon others (I’m grateful I have others), planning tasks in stages, a fatigue that words cannot explain along with mental fog and pain have become the daily norm. “Oh well, c’mon, just push yourself through it!” Right? Unfortunately, with MG “pushing through it” lands you in bed with an increase in symptoms or in the hospital in crisis. They don’t tell you that.
I’m not writing to paint a gloomy picture. I am writing to tell you what they don’t tell you. You will learn more from your MG friends than you will the doctors. You will have to advocate for yourself because your life depends upon it. IF you have a receptive doctor, you will have to educate.
I am here to tell you, you are not alone. Go to social media and find a group that works for you. It is in those groups that knowledge is shared, tips on coping with symptoms and side effects are exchanged and friendships developed.
People helping people.