Navigating the emotional ups and downs of life with MG
I fluctuate between celebrating milestones and grieving my old life
There’s no denying it: Living with myasthenia gravis (MG) can make a person feel insane. One minute I’m celebrating a new physical milestone achieved, and the next I’m lamenting and grieving how much I lost when I got sick.
It’s these constant emotional ups and downs that make living with MG more difficult than it needs to be.
I frequently write about my outlook on life. I always strive to find the positives, the silver linings, and the lessons learned from hard times. As American author Napoleon Hill wrote, “Strength and growth come only through continuous effort and struggle.”
My life is a daily struggle.
Feelings I struggle with
I struggle with balancing the physical things I want to do with the things my body is capable of doing, for one. At the time I’m writing this, my daily step goal is 2,200. I’ve gotten to this point with slow, methodical, and consistent work to improve my strength and stamina. It’s also a result of a great treatment plan from a care team that listens to me and wants me to be able to live my best possible life.
There are days I find it hard to celebrate reaching my step goal because I’m grieving the days when I could easily reach 10,000-20,000 steps. But as I’ve said before, “comparisonitis” is the thief of joy. I allow myself to feel the grief of no longer being the person I was before MG came knocking on my door. What I don’t allow is a downward spiral that becomes an extended pity party.
I struggle with saying no; as a result, I end up overextending myself. I still want to do all the things, so when asked to volunteer for a committee or help with an event, I say yes when I should be saying no. I have a heart for service; it’s what made me a good medic, in my opinion. So when I have to decline an ask, I find myself feeling guilty.
I feel guilty for a lot. This feeling creeps in when I’m lying on the couch and have to watch those around me take care of basic household chores; when I have to call on friends for help with filling the wood boiler for our heat; when I think back on all the times my son didn’t have his mom at school or sporting events because I was too tired or weak. Feeling guilty after a rare disease diagnosis isn’t talked about enough.
I struggle significantly with guilt, but I work on it often with my counselor. It’s a common theme when I discuss my “stuck points” — feelings or events I can’t get over, around, or through on my own. For a long time after my diagnosis, I struggled with the idea that therapy would help me accept and make the best of life with MG, but I’ve learned I need help tackling certain issues.
Through these feelings of guilt, inadequacy, comparison, weakness, grief, and everything that comes with them, I’ve learned more about myself and just how strong I really am. Strength isn’t just the physical brawn that the world can see. It’s also our grit, determination, perseverance, and mental fortitude. It’s the ability to look a crap day in the face and still be thankful for the sun shining on us or the breath in our lungs.
I may not be able to ride on a regular roller coaster anymore, but thanks to MG, I can still experience emotional ups and downs. When I’m in the valleys, I choose to look up with excitement, knowing I’ll reach the peaks soon enough.
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.
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