I Grieved for Both My Past and Future After My MG Diagnosis
When I was diagnosed with myasthenia gravis (MG), it took me a few months to accept that my body would never be the same again. It took even longer to understand what that really meant.
I went through stages of denial, anger, sadness, and every other negative feeling a person can imagine. I knew there had to be a name for the feelings I was experiencing, so I looked up my emotions on the internet. And one after another, the search results gave me the same word: grief.
For a long time, I thought grief was something a person felt when they lost someone they loved. But after doing more research on the topic, I realized it wasn’t limited to the loss of human life. Any kind of major loss could cause a person to go through the stages of grief.
Being diagnosed with a chronic illness like MG can cause a person to go through a period of grief. In my case, I grieved for the life I’d had. Before MG, I never gave a second thought to my daily activities. I did whatever I wanted to do without fear of weakness.
I also grieved for the life I thought I would have. Everything from vacations to grocery store visits now had to be thoroughly planned out. The out-of-town college I wanted to attend? It was completely out of the question now that I could barely walk on my own.
Grief ran both ways for me. I had to say goodbye to the life I’d lived and the one I wouldn’t know.
That isn’t to say grief took over my life. In a weird way, my grief led to a clean slate. What fresh opportunities were possible in my new life? What had I taken for granted that should be celebrated?
When I looked at my grief in this new light, all I saw was a chance to do things better than before. Yes, I had MG, but I wasn’t dead. I still had a shot at a fulfilling life.
So maybe I had to plan my vacations a little more carefully now. Maybe I had to get a bit better at remembering to take medication. In the grand scheme of things, I wasn’t any worse off than anyone else in the world.
We should allow ourselves time to grieve what we’ve lost. It’s a part of life we all go through at some point, so we must let it run its course. I try to see it as a period of transition. And isn’t life all about change?
Change is inevitable, but it doesn’t have to mean the end. It’s simply a time when we move from one stage of life to another.
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Comments
Pawan Datta
Thank you for this article. Still going through the grief period.
Michelle Gonzaba
Hi Pawan. While all of our journeys are different, I can relate to your journey of grief. It takes time but I know you will come out of this period stronger. I send you well wishes and thank you for reading!
Dayana Mathews
Thank you for this article. My mom has diagnosed with mg in 2020.We giving her more support and courage to overcoming this grief period.
Michelle Gonzaba
It sounds like your mom has a great support system! No matter how short or long her grieving period is, she will get through it. And she will be stronger after. I wish you and your family strength and peace. Thank you for commenting and reading!
KATHY Lopez
Thank you for this article. After being diagnosed about 18months ago, I just kept going with daily activities. Making adjustments here and there as my symptoms were not in control. My famous words “I’m fine” just echoed to those around me. Trying to adjust to my new normal. Before my diagnosis my family scheduled an Hawaiian vacation for myself and family for my upcoming 70th birthday. Covid came do all was postponed, except for my MG. What a difference a year makes. A few months before we were scheduled to go I was excited but apprehensive as things were planned. Outings and attractions beach time etc. A year before I could’ve kept up, could I now? Bluntly I could not. I felt completely unable to do the things I had hoped to see and do. Thank goodness for my family that assisted me. I took 2 falls, my walking terrible and even though I had resisted because I thought I can do this, my family insisted in wheelchair at airports. I would not have made it. Now that I am home the reality of what was, what is, and what will be is right in front of me. I hope to start IGIF soon. My new normal is unknown but as the writer or this article said, it’s just a new future. My biggest challenge is being around and healthy enough to see my grandson grow up. It’s a challenge I’m going to take on. Best of health to you all.
Amy
It took me years to get over my diagnosis. Even though I have a mild case as of now the fear of it getting worse is with me every day.
Michelle Gonzaba
Amy, I can definitely relate to the fear of it getting worse. Most of the time I'm ok but then I'll suddenly get anxious if I feel even a twinge of weakness. All we can do is take care of ourselves and try to be as happy as possible. I send you well wishes and thanks for reading and commenting!
paul spy
Can MG get better? Or should I look at getting a wheel char? I also have Ocular MG and is there a chance that it will get better?
Vietnam 1967
Thank You
Michelle Gonzaba
It can get better! I have been in remission for five years. Everyone's journey is different but there are plenty of ways to treat MG. And doctors are having breakthroughs every day that help people with MG get better. I hope you can work with your doctor to find the right path for you-it might take some time but you will get there. Thank you for reading and commenting and I send you well wishes.
Janet white
Thank you and thank goodness we have people like you in our myasthenia lives
Who have the skills and kindness to write and share and summarise how difficult Road with MG is
Xxx
Michelle Gonzaba
Thank you, Janet! I can only hope my columns help someone at least a little bit. We are all in this together! Thanks for the comment.
Ronald E Clever
I never went through a grief period that I am aware of. I have thought about what I used to do but maybe because this came on in my 50's and I am now 60 it coincided with getting older. The most grief I have experienced is not being able to travel in retirement like I had planned. I tell all younger people to travel when you can cause you never know what the future or retirement will look like.
Michelle Gonzaba
Hi Ronald. That is great advice that can be applied to not only people with MG but everyone. We never know what will happen. Ever since the COVID pandemic hit, I've been regretting all the trips I put off because I thought I had all the time in the world.
I am sorry you have had to grieve over the trips you can't take in retirement. I hope you can find a way to still travel (once the world is safer) in a way that works with your MG.
Thanks for reading and commenting!
Hilda Edwards
Thank you everyone. I found all these comments interesting and encouraging.
Suzanne
Another beautiful article, thank you! The "clean slate" makes me think of The Guest House by Rumi:
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.