Finding Hope in The Midst of a Pandemic
I remember when the news started pouring in. Each day I fearfully anticipated the next update on a new virus taking over the world. It felt like a dark cloud was settling in, a suffocating fear. Fear of the unknown, fear of getting sick, fear of change.
I had just found my footing again after being diagnosed with anti-MuSK+ myasthenia gravis (MG) the year prior. My symptoms were no longer as debilitating. My son was in preschool on the weekdays. The main focus of each day was taking care of my baby girl with the help of family and friends. It was challenging, but manageable.
Adjusting to the new normal
As the weeks went on and the world shut down, it felt like I was stripped of my bearings. I once again had to adjust to a new normal. I heavily relied on my community to help with my daily tasks. Something as simple as a diaper change or loading the dishwasher caused neck and swallowing weakness. The thought of having both kids home all day was honestly frightening.
The first week was rough, but as time went on my body adjusted. I found ways to manage my symptoms and ask for help from those closest to me. And in the midst of it all, I couldn’t help but feel like people finally understood what it felt like to be forced into darkness.
Every time I went on social media the first year of my illness, it felt like I was watching the world leave me behind. Friends climbing the corporate ladder, traveling around the world, even just enjoying coffee with their friends would send waves of hopelessness through me as I lay bedridden. It finally felt like the world understood.
Finding the right treatment
My body kept up physically for most of 2020. However, by the end of it, my symptoms started taking over again. I had tapered down my prednisone dosage from 60mg to 5mg and my body couldn’t keep up. Each morning I felt out of breath, had no energy to cook, and due to my swallowing issues was steadily losing weight.
I had been considering Rituxan for a long time. It’s known to be an effective treatment specifically for anti-MuSK+ MG. I finally took the leap in February 2021. It’s been a miracle for me. Most of my symptoms have been clearing up. I feel hopeful, I feel alive and I feel excited about each day for the first time in a long time.
My journey to hope
Finding the right treatment is a journey for all of us with myasthenia gravis. MG is also known as “the snowflake disease” because of how differently our symptoms affect us and how individualized our treatments need to be.
If I could tell myself one thing while I was in the pit of this disease, I would have said “Don’t give up. Everything will be okay. You’ll get through this.” Maybe you need to hear this today. Though at times this disease can feel like it’s taking over our lives, know that there’s always a light at the end of the tunnel when you look for it.
Whether it’s through pursuing new treatments, reaching out to a community, or even just treating yourself to that vanilla sweet cream cold brew, find your light, and don’t give up.
Now that the vaccines are rolling out and the world is slowly reopening again, I can’t help but smile at how timely it is. This time, the world isn’t leaving me behind, I’m coming up for air with the rest of it.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?