It’s that dreaded time of year. Everyone seems to be sick — you hear sniffles and coughs constantly in every public space. It’s always stressful, because living with a serious autoimmune disease like myasthenia gravis (MG) means the margins between being “OK” after catching a virus and suddenly being very ill can be very slim. The pandemic made that reality even starker for so many of us. I recently got a bad case of the flu after my husband was sick, and it was another reminder that I have to prepare for how to manage catching a virus and have contingency plans.
Being immunocompromised and immune-suppressed means periods in the year when viral activity is higher become an even more heightened effort of self-preservation. The fact that we often have to spend so much time in medical spaces puts us at constant risk.
The first step when you get sick is accepting that the virus is happening. I always go through a process of denial and bargaining, hoping that symptoms are related to something else. But at some point, I have to accept that I am sick.
I have strategies I use when I do get sick. For me, the most difficult part is being able to cough when I’m very congested. In generalized MG our respiratory muscles sometimes don’t function properly. It’s always a struggle to have enough muscle strength to cough successfully.
I got a very bad case of COVID a few years ago. I coughed for months. I talked to my pulmonologist about it, and she provided an oscillating vest for me. This isn’t standard treatment for MG but because my respiratory muscles are very weak all the time, I need extra support to help avoid pneumonia when I get sick. I also have a device that shakes the lungs when you breathe into it. It helps break up congestion to make coughing less difficult. Having these things on hand to start using as soon as I get sick has really helped.
It’s also important to adjust expectations when fighting a virus. Recovery will take longer for us — sometimes frustratingly longer. Rest has to become even more of a priority. It’s important to communicate that we are sick and are more limited than normal.
I have constant infusion treatments, but when I get sick sometimes that can change my treatment schedule. I still need my treatments to keep my MG stable, but the schedule has to be adjusted.
I have also put off seeking medical care when I am sick many times over the years. When your baseline is already low, it can be hard to know when things become serious. The risk for a myasthenic crisis is always there; catching a virus is a common crisis trigger. We have our own unique level of awareness and vigilance as MG patients. It’s also essential to know that some treatments, including some antibiotics, are very dangerous for us. This is all part of having a plan and adjusting expectations when catching a virus.
I try not to panic when I get “normal sick” on top of being MG sick, yet it is anxiety-inducing. It just is. But I’ve battled many viruses while living with a severe form of MG and have found strategies to get through it. It’s part of the complexity of living with a rare disease. I imagine learning how to “find a way” is a very common experience for rare disease patients. We don’t have to do this alone or without a plan. We can find a way.
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