MS Makes Everything a Risk: My Thoughts About the COVID-19 Vaccine

In life, there are always going to be instances of exposure to danger, harm, or loss. It's what we call risks. Some risks are financial, some social, others health-related. Some are unnecessary whereas others are indeed necessary. Some are our choice to take, others are not. Some we can avoid and others we cannot. I know all about it because living with MS, every choice I make - large or small - has an element of risk.

Risks we take with MS

You may choose to go to a casino and gamble at the risk of losing money. Or you may opt to date someone with unsavory behavior and risk them hurting you physically or emotionally. Perhaps you make the decision to operate or ride in a car without your seatbelt. That can put you at a dangerous risk for harm in the event there's an accident. When I choose which medications to use to manage my MS symptoms, knowing that they could cause side effects - some potentially quite serious - that's considered a risk. When I ignore my body's need for rest, I am risking suffering a flare.

I'm worried about side effects from the COVID-19 vaccine

With all of that in mind, I think of the risk of getting the COVID-19 vaccine. To be clear, I am referring to my personal feelings as it relates to me because I am cognizant that medical professionals and experts advise that those with MS should be vaccinated. In fact, I've read and been told that the effects of having COVID-19 outweigh any potential risks from the vaccine. I did read on the National MS Society's website that for those taking Kesimpta, Lemtrada, Mavenclad, Ocrevus, or Rituxan, you must coordinate the timing of receiving the vaccine with the timing of your DMT dose, and we are encouraged to work with our MS healthcare providers to determine the best schedule.¹ At any rate, my concern is that the possible vaccine side effects could exacerbate my MS symptoms.

Scared of exacerbating my symptoms

I personally know 4 vaccinated, non-MS folks - and read testimonials about others - who've experienced the adverse side effects from dose one of the vaccine. There was pain, fever, sore limbs, etc. Temporary, yes, and they got past it. But for me, who already lives with pain, aching, and burning limbs AND the risk that those same side effects can quickly exacerbate my progressive MS, my already severely limited functionality...I will weather that storm differently. Of course, like other medical decisions, the decision to get a vaccine is best made in partnership with my healthcare provider, I know. And he says it's safe. But I don't feel heard.

Risking the unknown

Doesn't anyone get that I am struggling here? I'm still a bit weakened and have not even recovered my piece of independence from my fall several months ago. Now I must risk another 'hit' to this horrid disease? Risk my quality of life on purpose? What is my safety net if I take the risk of not being vaccinated, and what's my safety net if I take the risk to get vaccinated? And am I being selfish to those (especially in my circle) by not vaccinating myself? Am I courageous enough to risk the unknown? In the end, I think you have to go with the voices you trust the most and your own personal feelings. I just pray that the risk I decide will leave me resilient, confident - and healthy.