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 had trouble speaking during class. I had general weakness and difficulty breathing. I had to ride between classes because I couldn’t walk between them anymore.
I told a nurse about my mobility issues but she brushed me off. I probably just imagined it, she told me. But I knew these symptoms were not normal. Most 32-year-olds don’t need a cane, walker or wheelchair to get around.
My “imaginary” problems progressed rapidly. And the following year, after many more tests, a doctor diagnosed me with myasthenia gravis (MG).
I was a bit of a workaholic in my previous life. Things are completely different now. I had to stop teaching because my symptoms are so severe. I’m 40 now, but I lost my academic career in my 30’s.
MG has also taken away a lot 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 was devastating.
Still, I learned a deep lesson of gratitude. I find joy wherever I can. I know I would never have done this if I hadn’t had this disease.
Now I try to enjoy moments every day. Sometimes I sit in my garden and just watch the birds and leaves. It’s a good form of mindfulness. I started painting again – I never had free time for my art as I worked a lot.
And I still love music. I play the piano and maintain my vinyl collection.
I also draw on my research and writing background. I use these skills to raise awareness of MG and share stories of my journey through chronic illness.
I also have Postural Orthostatic Tachycardia Syndrome, or POTS, an autonomic nervous system disorder. And I advocate for the dysautonomia, MG and rare disease communities online.
I will save my energy to play piano, paint or do something creative. Sometimes my husband and I go for a walk outside and I 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 doctor appointments, tests, and IV fluids—I schedule a reward for myself afterwards. 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 plan what to eat to-go. This makes it feel a little funnier.
I take medication throughout the day, including an immunosuppressant. I also get IVIg infusions every week, a treatment that affects my antibodies in a way that supports my immune system.
Every day I use a BiPap (bilevel positive airway pressure) device to help me breathe.
I also had a thymectomy in early September. This is an operation to remove the thymus gland. This procedure can help relieve symptoms in some people with MG. It’s not for everyone, but my doctor and I have decided it’s my best shot at long-term improvement.
When I’m not recovering from surgery, I try to stay active and build my strength. At the moment I am working on walking longer distances. I take short walks around my house or outside almost every day. I also stretch regularly, which helps me manage some of my chronic pain from injuries.
I follow a pretty strict routine every day. I try to eat my meals at the same time. This helps me stick to my treatment plan – it’s important to take my medication and IVs at the right time.
If I need to make a call, I put it off in the morning and schedule a break afterward. But I have to be careful how much I talk. Talking, especially on the phone, can quickly aggravate my weakness. Difficulty breathing is a big issue for me.
Sometimes I can’t fully recover if I try too hard. It is therefore natural for me to take breaks throughout the day. But it’s not always possible to avoid my triggers. These include stress and overexertion.
I go into survival mode when I feel like I’m about to have a serious flare-up. I do what I call “militant” rest — I seriously limit how much I talk and move. I’m sticking with my BiPap. I may need to have my IVIg infusion earlier than usual to avoid hospitalization.
My husband is my caregiver and has been for the past 6 years. He helps me with many things. I haven’t been able to drive a car in many years, so I often rely on him when he’s going somewhere. And he does all the cooking and much of the cleaning.
But he has a full-time job and I know he gets tired. We’re trying to make sure he gets breaks too.
I am also thankful for my family and friends who offer their support.
When I was diagnosed I had never heard of MG. And I suspect most other people don’t either. It brings me joy when someone tells me they have researched my condition or treatment. I know it means they will have a better understanding of what my life is really like.
A diagnosis of a rare disease can be the beginning of a new life. It’s okay to mourn what you’ve lost. But prepare for the coming changes. How will you complete everyday tasks? How will you manage your schedule?
It’s important to accelerate yourself. Schedule appointments and treatments. Allow some recovery time after each task.
You may need to redefine your attitude towards rest. you are not lazy Breaks are not 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 get through it like you did before. But give yourself time and space to adjust to your new body and life.