10 things I wish I knew after my diagnosis of myasthenia gravis
A columnist shares some of her hard-earned wisdom
The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief. That was quickly followed by an intense desire to learn everything I could about the condition.
One of my biggest motivating factors was a strong desire to prove wrong the doctors who’d told me my symptoms were all in my head. I also wanted to be treated with the most cutting-edge technology, because I just knew I’d be one of the lucky few to go into medicated remission.
It took me a year or two to realize that the animosity I held toward many of the providers from my diagnostic journey wasn’t helping my health. My desire to prove them wrong only served to suck my energy battery dry, leaving me with nothing in reserve to work on improving my status quo.
That cutting-edge technology and research was just that — cutting-edge and saved for clinical trials. Before I moved to Wisconsin, participating in trials while receiving care at my local Veterans Affairs clinic wasn’t a possibility. My care team in Maine was understaffed and woefully behind on current recommended treatment protocols.
These were just some of the lessons I learned along the way. Through interactions with various advocacy and social media groups, I’ve come to realize that I’m not alone in these dreams and harsh realizations. So the following are 10 things I wish I could’ve told myself after being diagnosed with seronegative myasthenia gravis.
Lessons learned
1. While medicated remission is a possibility, based on my observations and the words of my doctors, it seems to be rare. The term implies that I could be virtually symptom-free and live a normal life, but still rely on medication.
2. Harboring ill will toward all the providers who dismissed you before you received your formal diagnosis will prevent your health from improving. It causes stress, anger, and frustration, which can all inhibit healing and growth.
3. At the same time, those feelings of anger and frustration are valid. Taking time to accept them at face value and putting in the work to move past them are important to your overall well-being.
4. Many people experience the stages of grief after receiving a diagnosis of myasthenia gravis or other chronic condition. It’s a valid and acceptable response to grieve the person you once were and the things you can no longer do as a result of the disease.
5. It takes a lot of trial and error to find the right medication cocktail or treatment plan that will work for each individual. Many MG medications can take weeks or months to reach full efficacy. While an immediate improvement may be desired, it’s not realistic.
6. Friends and family will come out of the woodwork to support you after your diagnosis. But that support will wane, even when the illness does not. It can be hard to feel like you’re being left out, left behind, or forgotten. It helps to remember that many people don’t know how to support someone with a chronic illness in the long term.
7. It takes time, but you’ll find ways to participate in the activities and events that are important to you. That participation might just look different from how you’d imagined it.
8. Acknowledging and accepting feelings of depression, anxiety, sadness, grief, frustration, and anger are important. On occasion, these feelings may lead you to feel sorry for yourself or throw a pity party. While it’s acceptable and encouraged to acknowledge these feelings, don’t wallow in them. Feel the feels, but keep pushing forward.
9. A diagnosis of myasthenia gravis is not a death sentence.
10. Having a healthy and loving romantic relationship is possible if you have MG. It just takes work, open communication, and a sense of humor.
What do you wish you’d known when you received a diagnosis of myasthenia gravis? Please share in the comments below.
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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Steve Getlein
Right on the money. I was angry for months. Didn’t do anything but drain needed energy. The only thing I would add is be careful when it’s hot or cold outside.
richard marquard
#6.7.8— my only symptoms left are fatigue( awake 11-12 hrs daily), 🔥 ng eyes, nose runs like a dripping faucet, no muscles, high anxiety). Feel blessed that’s all. Hard to accept new normal as it appears it will never get better.
I have great family support and offsets loss of most friends activities. Finding other ways to be relevant. “Always look at the bright side of life” is my mantra. Great article— beat the depression… we are not alone.
Lyne
Years of frustrations doctors saying I had fybromyalgia (saw Big Canadian specialist, always said I did not, in Ottawa), but in Quebec they would still think this after seeing double for 5 years, went back in Ottawa, where I use to work in a past life, went in Ottawa hospital to finally find out Of MG. After all emotions, etc mentioned in other comments,
one thing did sure helped me, after 7 years, was to do visual art…
No struggling, resting, no more explaining, I was and am so happy, to say after 24 years of symptoms, still doing art, you don’t think of anything while creating. I use to play music, but could not sing anymore, this is when I have started visual art which I think helped me out through all those years.
But still difficult in Quebec, I find since my neurologist passed away, met many neurologists, they all have different opinions.
Tried to stop Mestinon, all symptoms were back, so my family doctor, was taking good care of me,
but since many years he retired, so not being followed properly, medical system is crashing, still no family doctor, very frustrating, but now I live alone, rest when I wish, take mestinon and do my best…. With MG and dysphasia etc.
We know our body, with 24 years of experience, so,I rest when I need it and cope. this is what I experienced. But we are orphelins, in our province, we use to have the best system in the world, but sadly, not anymore.
no doctors, we either go to a doctor we don’t know, by GAP system, if and when a doctor is available, or emergencies when needed. With 27 hours waiting. It is very sad, in Canada.
Victory Houlihan
Have just been diagnosed with MG,I am 77. I honestly think I have had this for many years,but they say the droopy eye lid is the start. I can’t sleep,I literally cannot sleep. I feel like my body is tired but yet I am wide awake. I seem to have really weird symptoms,guess that’s why it’s called the snowflake disease. I am honestly counting down the days until I see the specialist. My husband had MS forever and one of my brother in laws had Parkinson’s,but I know of no one with MG. I know I’m rambling but I just am very confused.
Kate McClain
I was told I had bone cancer because my blood test numbers were so low. No one noticed the 3 huge tumors on my thymus until I was almost dead.
Had them removed. Was put on meds and they made me bend in half in agony. Quit cold turkey. Had been told not to do that.
I overdo yard work, shopping, etc and end up in bed sometimes, and have ptosis frequently...and double vision. Lungs are always a problem, but even with all that, I am generally doing ok in life. K