5 Things I Wish I Knew When I Was Diagnosed with MG
Last updated: September 2023
This year marks 10 years since myasthenia gravis (MG) began for me. My official 10 year anniversary of living with this disease. Looking back, I had so many thoughts running through my head when I received the diagnosis from my doctor.
There was denial and there was disbelief. There were so many fears and so many doubts. The uncertainty of what my life would be like was as confusing and it was terrifying. What would my future would hold? What would the future of my kids look like now?
I wish I could go back and tell that woman then that it would be okay. Really. Not only will she survive, but she will have her quality of life back again. If I could share with someone newly diagnosed what I know now that I wish I would have known then, it would be these 5 things.
Your life is going to change
First, your life is going to change. That’s not necessarily a bad thing though. There are so many ways I’ve grown and in areas I might not ever have had I not been diagnosed with this disease. I’ve learned what matters; what really, truly matters in life.
I’ve grown into someone who I’m very proud of. I’ve learned how to be strong. How to overcome challenges. How to not sweat the small stuff, and as my dad would say, "it’s all small stuff." I’ve learned to be my own advocate and how to fight for my health in ways I wouldn’t have before.
Your story can help someone
Second, your story can help someone. This was hugely motivating for me when I turned the disease into a purpose. A purpose to help share my story with others with the idea of helping them. This allowed me to be empowered, instead of playing the victim.
Your life is not over
Third, your life is not over. There will bad days, bad weeks, and maybe even bad months or years. But don’t live in those. During those moments, find the little things that make life worth it. The simplest of gratitude for what you can do will have a huge impact on your health and recovery. In my experience, a positive outlook is by far the most important thing you need to live with this illness.
You will learn your triggers
Fourth, you will become familiar with what your triggers are, what to avoid, and what to do when symptoms come on. This was one of the most terrifying things for me in the beginning ... the unpredictable nature of the disease. I thought that I’d never be able to live a normal life with this grey cloud over my head continuously that could rain at anytime.
Thinking that symptoms can just appear out of nowhere, for no reason scared me in more ways than one. The more I became aware of my body, however, the more I became aware of my triggers.
Now I know what to do when I start feeling symptoms, what to avoid, or maybe what to just prepare for in advance. Getting some control back in this area has allowed me to not be in fight of flight mode all the time which in turn has also helped my recovery.
Flares will not last forever
Lastly, know that when you have flare, it will not last forever. This was one of the more challenging things for me to overcome.
Every time I felt symptoms come on, every time I’d feel awful, it felt like it would never end. I would sometimes accept that that was the way I was meant to feel and tried to live a life despite it, but then the clouds would lift and I’d feel better slowly but surely. The key for me was to not rush the process otherwise it would set me back.
Living life despite MG
I look back at these last 10 years of my life and I feel proud. I’ve chosen to live a life despite this disease. When I look back at the memories I’ve created with my family, I don’t remember how awful I felt or how hard I had to push through the symptoms. I just remember living. Despite it all and against the odds, I’ve adapted and I’ve lived. And that’s something I never thought possible.
How often do you experience MG exacerbations/flares?