When I was diagnosed in 2004, it was a shock to my entire family. We had never heard of this disease and had no idea what it meant for my future. I had to take a year off school due to hospitalizations, treatments, and a thymectomy. I felt like I lost a lot of my confidence and independence, but I was still determined to remain positive and not give up.
For 13 years, I simply tried to cope with the hand I’d been dealt. I convinced myself that I had to remain positive because people always commented on that aspect of me. They never put pressure on me, but I was placing extremely high expectations on myself. I thought I needed to live with a rare disease, motivate others, keep smiling through all my treatments, and never let people see just how much the disease truly affected my emotions.
I think there may have been a pinch of not really accepting the enormity of having MG and the limitations it would place on my life. I always tried to push through. I once went to a party for a friend even though I was having a flare, and I kept dropping my glass. People assumed this was because I was drunk, and it didn’t help that I was slurring! When I look back, I realize just how stupid it was of me to even attempt leaving home for the party, seeing as I hadn’t told many people about what was going on. What would have happened if I had gone into a full crisis and needed a hospital admission? Was it worth it for one night out?
Last year, I finally saw the top neurologist in South Africa about myasthenia gravis, and after my appointment, we sat discussing our plan forward as well as what she had discovered. She then looked at me over the top of her notes and said, “Megan, are you coping, emotionally?” I looked back at her, tears filled my eyes, and I felt my stomach drop down to the floor. “Yes,” I replied, knowing full well that I was lying not only to her, but to myself as well. Mental health has such a negative stigma surrounding it, and I don’t think I wanted to admit to anyone (even myself) that I needed help coping.
I have now been on antidepressants for over a year without regrets. I have opened up about my journey, the emotions that come with being chronically ill, and the difficulty in having a disease without a cure. Is it a problem that I need some help coping with the difficulties that life has given me? Why was I so embarrassed to admit that I needed this help? Is it because I was trying to live up to the expectations I felt society was placing on me, or was I simply trying to be superwoman? Either way, I wish someone had asked me how I was coping earlier in this MG journey and offered me the help of an antidepressant. I used to cry on a daily basis and felt completely overwhelmed with life.
So, all of this said, I just want to let you know that it is OK to ask for help. It is OK to need that little tablet to see you through the day. It is OK to cry. Just never, ever give up.
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