Rose was diagnosed with myasthenia gravis in the summer of 2022. Born in Senegal, she has lived in Canada for 20 years. She works as a project manager and a content creator in the personal beauty industry.
She first noticed MG symptoms while applying her makeup one day. She started seeing double and noticed her right eye was misaligned.
After a visit to the emergency room that turned into a two-week stay, she underwent multiple tests before a simple ice pack test confirmed her generalized myasthenia gravis diagnosis.
She tells her powerful story of coming to terms with her diagnosis and how it has changed her life.
I was diagnosed at the hospital. I think I was in instant denial. I remember that when the doctor explained that I had myasthenia gravis, I had a big smile, and I said something like, “Okay, glad to know what it truly is.” But I was really scared and anxious.
MG is just so rare that at the hospital, the staff treated me as though I was a spectacle – something that they had never seen before. I remember medical students would come into my room saying “Oh, you’re the one who has MG, wow! That’s so nice!” I thought, “Is it?!” It was extremely overwhelming and uncomfortable at times.
I think the worst part of living with MG is the set of challenges that come after the diagnosis. That re-adaptation process, accepting that this illness is for life. I’ve always been a hopeful person, but there is no such thing as a “cure” for MG – not yet.
I find myself grieving the person I was before my diagnosis, trying to find myself again as I accept that I have this disease. I think that’s a challenge, and it takes a lot of acceptance. There’s no going back to the person I was before. Acceptance takes a lot of living in the moment and not going back to the past.
That is the most challenging thing – comparing how I am today to how I was, noticing all the things I can’t do. I am on a good treatment plan, but it is still a work in progress. I have side effects that are unpleasant. I had a big flare up, and that set me back. You experience a lot of ups and downs as part of the whole process of learning to live with this disease.
MG makes you insecure about your body. You used to be able to do something before MG, and now you’re not so sure if your body will be capable. I’m not able to commit to plans, since I don’t know how I will feel from one day to the next.
Living with MG has taught me to appreciate the present moment and to appreciate life. Now I don’t necessarily celebrate how much I do but how much intention and love I put into what I do. Having MG taught me to be kinder to myself.
I never thought, at 30 years old, I would celebrate walking! Or biking a long distance! I appreciate my body in a different way. It’s not about aesthetics – it’s about thanking my body for carrying me through the day.
I want people to know that MG is a rare and difficult disease. It’s hard to live with a disease that researchers don’t fully understand. Why did I get this? No one really knows for sure.
I hope others diagnosed with MG realize that they are stronger than they know, and their journey is quite unique.
Not many people will understand what you are going through. It’s okay to have days where you feel weak and overwhelmed. It’s okay if you can’t do everything you want to do each day. It’s important to be as resilient as you can be. It’s not about never failing but being able to rise up.
It’s important to surround yourself with love and protect yourself from stress. You don’t have the luxury to deal with that anymore.
Carry yourself with the belief that you can overcome more than you think. Give yourself grace because there is beauty in this struggle that we are facing… because of the hope that carries us daily. The strength that we must have to go through the ups and downs of MG. We somehow always find a way to get back up.