Before my diagnosis, I was perfectly healthy. Even childhood ailments like chicken pox or mumps didn’t inflict me. In fact, I had never even had the flu! I was an extremely active girl and am proud to say that I even had a six-pack from all of my competitive dancing.
At the end of 2003, when I was 15, I flared up with my first myasthenia gravis symptoms. Doctors diagnosed me in January 2004, and immediately prescribed Mestinon (pyridostigmine) and prednisone to try to get my symptoms under control. There was no discussion about the effects these medications would have on my poor teenage body. Being a teenage girl is difficult enough, but add water retention, skin breakouts, and the inability to talk or participate in events, and you can feel like you are completely falling apart.
Prednisone is jokingly known as “Satan’s Little Helper” due to all of its side effects. Don’t get me wrong. Prednisone has truly saved my life. But I wish it didn’t come with all of its negative aspects: sleep problems (insomnia), mood changes, increased appetite, gradual weight gain, acne, increased sweating, dry skin, thinning skin, slow wound healing, headache, dizziness, spinning sensation, nausea, stomach pain, bloating, and changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).
The hardest thing for me is hearing, “If you just lose weight, it would make such a difference.” Or my favorite: “Look how chubby you are!” I wish moving the weight would be easier, or that I wouldn’t have to take medication that causes water retention, chubby cheeks, and much larger weight than I am comfortable with. As if having MG weren’t enough, life decided it would be fun to add in steroid side effects as well! But I am eternally grateful for these medicines because I know that I wouldn’t be alive today if it weren’t for them.
Having an autoimmune disease is tough, but we are tougher. I just want people to understand that we don’t always choose the way we look or feel. We need support and love, not judgment or harsh words.
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