Many of you know of my journey, how I went years with the symptoms of Myasthenia Gravis, but not the diagnosis. Some of it was my choosing as I turned down additional testing for MG years ago. Back then there was an issue with insurance companies where they could elect not to insure you if you had a pre-existing condition. This meant if you ever changed jobs or attempted to get new insurance, you may not be covered for any particular condition you might already have.
My neurologist was pretty sure I had MG, but my blood tests kept coming back negative for the markers they normally looked for. I decided to forego additional tests like an eyelid biopsy or tensilon testing for fear I would no longer be able to get insurance if those tests turned up positive. Although my symptoms were uncomfortable, I could live with them, so that’s what I decided to do.
Thirty years later, when my symptoms worsened after having contracted COVID, I returned to the neurologist. The updated blood testing still didn’t confirm a marker for MG (I’m seronegative), but clinical tests confirmed I did indeed have Myasthenia Gravis.
When I received that diagnosis, it was a relief. I soon discovered that relief was two-fold. For so many years, I struggled with wondering if it was all in my head. Having a confirmed diagnosis finally validated the condition and relieved those doubts. That’s a huge one for someone with MG.
I heard from a gentleman just yesterday who told me several doctors were telling him there was nothing wrong with him until he went to a neurologist who immediately diagnosed him with Myasthenia Gravis. That’s a very difficult life to live experiencing symptoms, not knowing what’s causing them, and doctors telling you it’s all in your head. That’s too much stress for anyone to bear. This man wasn’t crazy. His doctors were just incompetent. They had reached a point in their career where they thought they knew everything and no longer listened to their patients. None of us need doctors like that.
Thankfully, he didn’t give up and he found a good neurologist, someone that not only listened to him, but believed in him. Listening and believing are just as important skills for a doctor to have as their ability to heal. The truth is, you can’t perform healing if you refuse to listen and believe. I’m so thankful he persevered and found a doctor who could help him.
The second source of my relief was I now had a purpose. Living with any type of progressive condition is difficult. It’s so easy to fall into the trap of “poor me”, but “poor me” gets you nowhere. In fact, it makes matters worse. I realized I can’t change my situation. Yes, the medications help me with my symptoms, but I can’t make MG go away. I needed a purpose.
I don’t believe my MG was punishment sent from God for something I had done or had failed to do. I don’t believe he allowed me to have MG because he had forgotten about me. I believe God wanted to strengthen my faith and find purpose in what was happening. He allowed me an opportunity to do something positive with my life and the cards I had been dealt. I believe he wanted me to make the most out of what I was experiencing.
When I first began writing this blog, my intentions were to try to help others who may also be living with MG. Sharing is caring and my blogs were one way I could share my story with others. I wanted to convince them they were not alone in their fight with MG. I quickly learned from the number of hits my blogs were getting and the number of comments I was receiving, that I truly was helping others. I also quickly learned how much I was helping myself. My blogs were therapy for me, an outlet to share what I was holding inside and a way to find purpose for my journey. I was helping others, but I was also helping myself.
I get comments and emails all the time from people with MG and lots of other chronic conditions. That validates that my blogs are worthwhile and that I’m touching other peoples’ lives. I love receiving your comments and emails. It means my efforts aren’t wasted. It proves my purpose.
To the gentleman who wrote, and everyone else out there with MG, I encourage you to find purpose in what you’re going through. You don’t necessarily have to become an ambassador for MG, but I encourage you to find a way to make a difference in the lives of others. Maybe it’s being kinder. Maybe it’s being a best friend to someone. Maybe it’s sharing your faith. Maybe it’s helping someone who’s worse off than you. Whatever it is, find a purpose. I think you’ll quickly find that purpose is what will help you through the day-to-day challenges of MG. Purpose is what makes life worth living.
Maybe a purpose hasn’t come to you yet. Maybe you’re so busy struggling with MG that you haven’t yet found the time to think about how you can turn your situation into a positive. Make time. Ask God for help. He will help you find your purpose. The quicker you find your purpose, the quicker you’ll see your situation as an opportunity rather than just a burden.
The memories I want to leave my family and those that know me are not memories of a crotchety, grumpy old man. I want to leave memories of someone who had a purpose and went after it. I want that for you, too.
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