June 23, 2021 at 8:38 pm #16368Michelle GonzabaParticipant
In my latest column, I talked about my myasthenic crisis and how it affected my mental health.
After my experience in the hospital, it took me a while to realize how much it affected me not only physically but mentally.
Have any of your MG experiences affected you mentally? Have you experienced symptoms of PTSD after a traumatic MG-related event? How do you deal with your reactions/emotions?
July 21, 2021 at 12:04 pm #16549Rick FedermannParticipant
MG has not caused me any PTSD issues, because it is just one more thing in a long history of things and is far from being the worst thing I’ve experienced. I’ve had an interesting life, with high highs and low lows. By middle age, I carried a crushing burden of frustration, sadness, anger and regret. I had an equal amount of great memories, but the bad memories were what weighed me down.
Relief came from an unexpected direction. My adult daughter asked me to share my full story with her. So I wrote a private autobiography for her. I anticipated it would be less than 100 pages, but each memory that I wrote down opened more memories, and those opened more, and more. When I was approaching 500 pages I decided to stop and finish it. She was very happy to receive the book.
Surprisingly, I was also very, very happy about it. My memories no longer burdened me. Regrets are still regrets, but they are not daily thoughts and they do not weigh me down. Difficult memories are now separate recollections, not a collective sack of bad stuff that I carry around on my back. The world is now a bright, positive place.
Long-standing mental health guidance has been to write things down to get relief from problems. I think that guidance is too simplistic. If I had simply kept a journal, it would have been just another way to keep that stuff to myself.
Writing your experiences with the intention of sharing them with someone else is a very different activity. You begin with rough notes for the most memorable things. Those things lead to remembering other things. Each thing is visited, revisited and revisited again, as you flesh out your narrative. Then they are visited again when you proofread, adjust timelines and consider the tone. It is work, is time consuming and can be an emotional roller coaster.
In doing this work you become your own therapist, deeply examining and reflecting on your experiences. Just as important as the self-examination is that fact that we are a social species. Everything we do is related to other people and isolation is a punishment. “No one knows what it’s like, or what I’m dealing with, or how I really feel” are significant contributors to PTSD. Writing your experiences as a story that is shared with at least one other person unlocks them from the prison of your mind.
For anyone suffering the frustrations and impacts of MG, writing your experiences and thoughts as a publication-ready story may be very beneficial. It was life changing for me.
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