I’m Accepting How MG Has Changed My Body
Being diagnosed with myasthenia gravis (MG) is a heavy burden to bear. In the years following my diagnosis, my medication dosages increased and I gained weight. I find it difficult to compare the literal and figurative weight of this disease.
As a woman in her 20s, the weight gain was damaging to my self-esteem and confidence levels. Before MG became a part of my life, I enjoyed plenty of exercise, which helped me to maintain a beautiful figure I was proud of.
I was prescribed prednisone at my first consultation. I remained on the medication for the next five years, which led to several changes to my once shapely figure. I developed a “moon face,” with fluid retention visible in the cheeks, along with skinny legs, a flat bum, and a flabby stomach. Several dark stretch marks accompanied these changes in my body.
When my dose was increased, I gained weight, and when it was lowered, I lost weight. My once slim figure was reduced to what I saw as a fluctuating blob of flab.
Now, I am finally done with prednisone due to some adverse psychiatric side effects, yet I still struggle with the weight I’ve gained. Having a neuromuscular disease like MG makes it difficult to exercise, and low energy levels make it hard to change dietary habits. I have started an exercise routine, and I’m excited to have lost some weight. However, I am still miles from where I once used to be. Prednisone has forever changed my body, and I am still working on accepting that — and I hope that eventually, I will.
I have had feelings of shame and guilt and experienced a significant decrease in my self-confidence, thanks to the weight gain. But those are not the only effects it has had on me.
This experience has shown me that I am more than my physical appearance. My friends and loved ones stay in my life because of who I am, not because of how I look. I’ve learned to appreciate the people who support me through the bad physical and mental health days. I realize that my opinions matter and my brain functions well despite my outward appearance. The fragility of aesthetics has emphasized the durability of emotional health. I feel empowered by believing in myself despite what I perceive to be my limitations.
I may be physically heavier, but I am also more abundant in knowledge and have a better understanding of who I am. I know who supports me and who does not. I am full of life and love to share with the world because life is beautiful and I will never stop fighting.
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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.
About the Author
Robyn
Hi!
So happy to have found this page, I was diagnosed with MG last year October (I'm also originally from SA but have been in London for just over a year.) I'm not on predisone, because I'm also T1 Diabetic (yay for me and my unlucky health). I find it hard to do exercise because it just leaves me feeling so rubbish. I was wondering what you found that works for you?
samantha
I was diagnosed with MG a little over 3 years ago and have in the past year worked my way up to practicing yoga regularly. I thought I would never be able to move again or work out. I had a thymectomy and have been on mestinon and IVIG for 3 years. My symptoms were finally better under control about a year ago but my muscles were like jello. It has taken time to build any of it back but it IS gratifying to know that it IS possible :) Try yoga it has changed my life. Literally.
WendyC
I also have had a terrible time with exercise. I have kept my elliptical (hoping) but did get rid of my treadmill. I too have found that if I overdo anything, even just walking too much at a festival, for the next 48-72 hours I feel like I have the flu. My body doesn't want to work and everything will hurt. I'm trying some new mindsets. Trying to make sure I limit my hours working outside, heavy labor, etc., even with just house chores, I try to not over do so I can feel half normal. I was very active prior to 3 years ago and now also have muscles that have deconditioned on top of the crazy MG inabilities. I feel if I can recondition, albeit slowly, maybe this will help. I'm going to try my elliptical literally 2 mins each hour for just 20 mins a day and see what happens. Hoping it will work and won't make me feel super crappy for days to follow. I'm hoping there are other people out there with MG that may have figured out how to make this work and feel at least 75% their oldself. I'd like to hear.
Carole Prosser
You have described exactly how MG makes me feel with the weight gain and attempts at exercising. I have been taking Mestinon and Imuran for over 20 years, following a previous 10-year search for a diagnosis prior to receiving an answer. Because I have generalized MG I have lost all reflexes in my knees and ankles which presents its own set of struggles. Having always been a very active person participating in school and community activities, the biggest hurdle for me was coming to terms with what I could no longer do. I found, through paying the consequences, that I could neither control nor ”push through” situations. Accept the fact that the many limitations and struggles will be your daily companion until a cure is found. Accept the unpredictability of MG as a constant, sometimes changing from hour to hour. Neither attempts at exercising nor dietary changes make MG “go away.” Support from other myasthenics helps tremendously. Vague “flu but not really flu” are so hard to explain to someone who has not experienced MG. Take each day as it comes and plan your day accordingly. MG always wins!
Barbara morgan
I was just diagnosed with MG and I also have MS I thought the medicine was making you have more energy and able to move more. I didn’t know it took everything away from u if it makes you feel like that there’s no sense in me taking it because I’m the same way now