By Stefani Shea-Akers, as told to Keri Wiginton
In 2013, when I was an English professor at a community college, teaching became difficult. I struggled to speak during class. I had some general weakness and trouble breathing. I had to drive between classes because I could no longer walk between them.
I told a nurse practitioner about my mobility issues, but she brushed me off. I was probably imagining things, she told me. But I knew these symptoms weren’t normal. Most 32-year-olds don’t need a cane, walker, or wheelchair to get around.
My “imaginary” problems progressed quickly. And the following year, after a lot more tests, a doctor diagnosed me with myasthenia gravis (MG).
The Good and Bad of Life After MG
I was a bit of a workaholic in my former life. Things are completely different now. I had to stop teaching because my symptoms are so serious. I’m 40 now, but I lost my academic career in my 30s.
MG also took much of my independence and some of my hobbies. I used to write my own songs. But I can’t sing them anymore. Losing all that, and more, has been devastating.
Yet I’ve learned a deep lesson of gratitude. I find joy wherever I can. I know I never would’ve done that if I didn’t have this disease.
Now I try to savor moments every day. Sometimes I sit in my yard, just watching the birds and leaves. It’s a good form of mindfulness. I started painting again — I never had spare time for my art when I worked a lot.
And I still love music. I play the piano and keep up my vinyl collection.
Plus, I tap into my research and writing background. I use those skills to raise awareness about MG and share stories about my journey through chronic illness.
I also have postural orthostatic tachycardia syndrome, or POTS, an autonomic nervous system disorder. And I advocate online for the dysautonomia, MG, and rare disease communities.
How Do I Have Fun?
I’ll save my energy to play the piano, paint, or do something creative. Sometimes my husband and I will go for walks outside, and I’ll use my power chair. And like everyone else, I enjoy spending time with friends and family.
When I have to do something overwhelming — I have a lot of medical appointments, tests, and infusions — I plan a reward for myself after. It’s a lot easier to get through the hard parts of my illness when I have something to look forward to.
My reward can be something small, like watching a movie, buying a new album from a favorite artist, or eating something I enjoy. I’m a chocolate lover. But when I have to travel for appointments, my husband and I will plan what take-out food we’ll get. That makes it feel a little more fun.
What Treatments Help My MG Symptoms?
I take meds throughout the day, including an immunosuppressant. I also get IVIg infusions every week, a treatment that affects my antibodies in a way that helps my immune system.
Every day I use a BiPap (bilevel positive airway pressure) machine to help me breathe.
I also had a thymectomy in early September. That’s a surgery to remove the thymus gland. This procedure may help ease symptoms for some people with MG. It’s not right for everyone, but my doctor and I decided it’s my best chance for long-term improvement.
When I’m not recovering from surgery, I try to stay active and build up my strength. Right now, I’m working on walking longer distances. I do short walks inside my house or outdoors nearly every day. I also stretch regularly, which helps manage some of my chronic pain from injuries.
What Are My Other Strategies to Manage MG?
I follow a pretty strict routine each day. I try to eat my meals at the same time. That helps me stay on track with my treatment schedule — it’s essential to take my medication and infusion at the right time.
If I have to make a call, I’ll schedule it in the morning and plan to rest afterward. But I have to be careful about how much I speak. Talking, especially on the phone, can make my weakness worse very fast. Respiratory problems are a big issue for me.
Sometimes I can’t fully recover if I push myself too hard. So it’s second nature for me to take breaks throughout the day. But it’s not possible to avoid my triggers all the time. That includes stress and overexertion.
I’ll go into survival mode when I feel like I’m on the verge of a serious flare. I do what I call “militant” resting — I seriously limit how much I speak and move. I’ll stay on my BiPap. I may have to get my IVIg infusion earlier than usual to avoid a hospitalization.
How Do I Get Support?
My husband is my caregiver and has been for the last 6 years. He helps me with lots of things. I haven’t been able to drive in many years, so I often rely on him to go places. And he does all the cooking and a vast majority of the cleaning.
But he has a full-time job, and I know he gets tired. We try to make sure he gets breaks, too.
I’m also grateful for my family and friends who offer their support.
I’d never heard of MG when I was diagnosed. And I’m guessing most other people haven’t either. It brings me joy when someone tells me they’ve researched my condition or treatment. I know it means they’ll have a better understanding of what my life is really like.
You have MG. Now What?
A rare disease diagnosis can be the beginning of a new life. It’s OK to grieve what you’ve lost. But prepare yourself for the changes ahead. How will you accomplish everyday tasks? How will you manage your schedule?
It’s important to pace yourself. Plan for appointments and treatments. Schedule some recovery time after each task.
You may have to reframe how you think about rest. You aren’t being lazy. Breaks aren’t wasted time. Your body and mind need them, especially if you want to avoid flares.
Chronic illness can feel like a marathon. There may not be a finish line, and you may not be able to make it through the way you did before. But give yourself time and space to adapt to your new body and life.