Recently, I was chatting with some of the other ladies in my support group who have been on a similar path as me — constant hospitalizations and relapses. They have also been through the heartbreak of having yet another treatment not work and the uncertainty of their future, health-wise.
We go through the mourning period from our diagnosis: shock, denial, anger, bargaining, depression, testing, and acceptance. But there are some events that make you go back to the beginning; “Do not pass Go, do not collect $200.” These may be relapses, family-issues, stress, or just life in general!
When friends tell me that the treatment that did nothing for me has put them into remission, I am thrilled for them! However, in the back of my mind is a sad little panda asking, “Why not me?” We went through so much to try Rituxin (rituximab), and I completed two rounds (10 sessions) hoping that it would prove to be my magic cure. When I ended up back in the hospital in crisis a while later, it, unfortunately, proved that a cure hadn’t been the case. But then I have friends who have had a few sessions and are back to their normal healthy selves. This is tough to hear! Am I a bad friend for being disappointed? I am so happy for them, but a little bit of me crumbles each time I start questioning myself.
I just want to say that it is OK to be sad. It is OK to question why you had to sick. It is OK to need antidepressants to help you get through the day. It is OK to mourn the loss of what could have been, and the loss of your life from before your disease took all away. It is OK to be angry; with your body, with your diagnosis, with people who don’t understand, and with the lack of treatment available.
BUT, don’t let it control you. You are more than your diagnosis. You are YOU, and you need to live beyond wherever possible — live beyond your diagnosis. I try to find something good in every day and I would rather put my focus on that than allowing the negative to fill my mind completely and stress me out. Find your tribe; love them hard. Find something you love to do, and do it whenever possible. Get a dog; they will love you no matter what. Get a cat; you will love them no matter what. Sit outside and breathe in the fresh air while enjoying the sunshine. And never forget that you are a diamond — rare and beautiful. x.
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.
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