By Kathi Timothy, as told to Carolyn Crist
Like almost every MG patient I’ve ever talked to, I could see the signs for years and years. I often tell a story about a time when I went boating with friends and got in the water but then couldn’t pull myself up the ladder, which hadn’t happened before.
After that, I went on a trip to Disney World and offered to save seats for the parade for hours. I didn’t want to tell my family that it was actually because I was too weak to walk and needed to sit down. At work, I stopped taking afternoon walks or getting coffee because it was too far away. At the time, I blamed it on my weight, aging, and stress at work. I thought I had all the reasons for why this was happening to me.
The final straw occurred when I didn’t have the strength to hold up my blow-dryer to straighten my hair. That’s when I really knew something was wrong with me.
Getting the Diagnosis
I’m one of the lucky ones. I was already connected to a neurology office with one of the top MG specialists. Even though I’m seronegative, which means my myasthenia gravis doesn’t come with antibodies that show up on a blood test, I got diagnosed pretty quickly in 2018.
My daughter, who is a nurse, was with me when I received the diagnosis. I had already overcome breast cancer in 1995 and even kept working all the way through chemotherapy, so I thought it would be no big deal to take a pill and get through this. However, my daughter started to cry because she knew what the diagnosis meant.
I had no idea what MG was, and even though I worked in health care, I had never met anyone with MG. But my daughter already knew how much my life was about to change. I received the diagnosis in July, stopped working at the end of August, and had my first major crisis in November. I was on a ventilator for 18 days and stayed in the hospital for 2.5 months. That was a quick awakening to my MG.
Accepting My MG
When you’re diagnosed, you may feel depressed or lonely. Most people don’t know what it is, have never heard of it, have never met anyone with it, and can’t pronounce it, so it can lead to feelings of isolation and stigma. I may look OK and don’t appear any different from yesterday, or my breathing may be fine now, but an hour from now, I may be gasping. Part of the stigma comes from not always looking like I’m sick. I feel like I have to prove it sometimes. MG is often invisible. So it’s hard to explain to people or get them to understand that sometimes, my nerves and muscles don’t communicate with each other.
Right before my diagnosis, I had gotten my master’s degree in health care administration, got promoted to director of patient access, and oversaw two hospitals. I was respected and so excited about where my career was going, but soon after my diagnosis, my doctor told me to take two weeks off to rest since I was getting increasingly worse. I agreed to do it for two weeks only. I had hoped to go back to work, but that didn’t happen.
I felt I had lost my sense of worth. I was so depressed. My daughter picked up my belongings from my office and hung my diploma on my bedroom wall, and I told her to take it down. She confronted me and noted that I based my worth on my work – but what about my family and grandchildren? That was the day I reprioritized.
Now I call it the gift of MG. Without the gift of MG, I wouldn’t be able to spend time with my grandchildren. I tell other MG patients that you can visit Pity City, but just don’t build a home there. We need time to grieve what we thought our life would be, but then it’s important to reprioritize and think about what you can do instead of what you can’t do.
Finding Community Support
After that, the biggest boost happened when I went to my first support group meeting. I saw the variety of people there and realized that MG has no boundaries. There are people like me, and they understand me. Making that connection was a huge turning point. I met one of my best friends through that support group. We don’t just talk about MG. We talk about all aspects of life.
Then I started volunteering to lead these support groups. That felt like I was showing MG who’s boss and taking back my control. It has been so fulfilling. Volunteering filled that part of my life that was missing when I stopped working in health care. It felt good to get back to being a helper, and the connections I’ve made have helped my own journey.
Now I lead two support groups on Zoom – one is the community support group that I originally joined, and the other is a seronegative support group. Sometimes we have speakers, and sometimes we just talk to each other. The groups are upbeat, and we hold up anybody who’s having a bad day. That’s so important, especially for new patients.
Hope for the Future With MG
There’s a lot of hope right now with so much research being done on MG. The Myasthenia Gravis Foundation of America recently held a scientific conference, and the number of poster presentations was impressive. They were on biologic treatments and other new therapies.
Treatment options have changed in the past few years. If something doesn’t work for you today, don’t worry because by next week, there may be something new in the works. It shocks me that we have so much research for such a rare disease. And although we don’t have much for seronegative patients right now, we will at some point. To me, it just means we haven’t identified the right antibody yet, but we will.
Most importantly, I want people to hear the hopeful message that life can be good. It’s a different life, but once you grieve your diagnosis and what you thought your life was going to be like, you can reprioritize and celebrate what you can do. I remember that the first time I was able to cook after my diagnosis, I put it on social media like I had won the lottery.
Celebrate the small victories. Give yourself grace. Find that support network. Connect.
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SOURCE:
Kathi Timothy, community outreach coordinator, Myasthenia Gravis Foundation of America.
