MG has taken so much from me, including my style and fashion

My bitter and best friend myasthenia gravis (MG) takes up a lot of space in my life: in my relationships, my daily routine, and my career choice. I’ve also realized that it’s completely transformed my appearance, as well. Can you believe this disease can affect our sense of style and fashion? It can, and I’m an example.

I used to study at the biggest university in Algeria, where I live. Back then I walked for hours, participated in all the events I could, and acted like an irresponsible teenager who ignored her condition for years. Feelings of fatigue were representative of the fun of my achievements; having breathing difficulties was just proof that I was fruitfully busy.

Because I didn’t have a diagnosis yet, it was easy for me to pretend that I was in good health, although deep in my heart, I knew something was wrong, I’d never seen others so tired that they couldn’t move their legs anymore, as happened to me. But I don’t regret this period of my life; I feel like I stole some happy, normal years from the universe.

But once I got my diagnosis, everything changed. I became attentive to my body’s signals and took tons of rest all the time, including less walking. Not moving around, though, meant gaining weight. At first, that was OK because I was in a normal weight range and some additional pounds wouldn’t harm me much. Then it quickly escalated to gaining 23 kilograms, or a bit over 50 pounds.

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What I didn’t expect was that I had undiagnosed fibromyalgia and that more weight meant more chance of tendinitis. My life moved from walking moderately with a good Mestinon (pyridostigmine bromide) treatment to having pain with every step because of tendinitis in my right ankle.

I tried physiotherapy and medication, but they didn’t help me have the physical capacity to push through rehabilitation exercises. I found myself in an unbreakable cycle, and now, I’ve lost my capacity for what I consider long walks of anything longer than 15 minutes.

Making changes

My only way to lose the extra weight became nutrition. I followed an anti-inflammatory diet religiously; it was strict, but it didn’t seem that way to me because I was motivated. I cut out gluten, sugar, and dairy products, which I convinced myself was a normal diet for an ill person. I’ve lost 12 kilograms (over 26 pounds) and found my cherished body shape.

Then I had a flare-up and couldn’t cook for myself anymore, so I regained all of it. I accepted my body would never be the same, yet I was enough in denial that I didn’t change my wardrobe to fit my new weight. I’d also stopped wearing jewelry and, because of constant foot pain, switched to an orthopedic shoe. When I finally found the courage to look in a mirror, I felt I’d gone from a stylish teenager to an unrecognizable adult.

I don’t have a problem with a plus-sized body, but I do have a problem with changing because of myasthenia gravis. I still can’t accept that MG took my body from me, as well as changing my career and my lifestyle.

I’m now trying to rehabilitate my appearance by wearing jewelry, searching for comfortable clothes that look good on my body, and eating for weight control about 80% of the time. The other 20% is for my pleasure because I deserve a break. I deserve to enjoy anything that makes me happy.

I have faith that sharing my insecurities with you in this column will motivate me to do some shopping and take care of myself again — both my health and my appearance.

Note: 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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.