Throughout the world, people are emerging from the COVID-19 pandemic, returning to a sense of normalcy. With the availability of vaccines, those with fully functioning immune systems can feel comfortable gathering indoors without masks and resuming life as it once was. But this is not the case for everyone.
Many of us with multiple sclerosis (MS) are on medications that suppress our immune systems, reducing our ability to mount a full vaccine response and leaving us more vulnerable to infectious disease. Not only are vaccines less effective for those on immunosuppressants, but our immune systems also struggle to fight off viruses, allowing a more severe illness to set in. As the world says goodbye to mask mandates, MS patients who are immunosuppressed feel abandoned and forgotten. We are often met with judgment as others try to understand how and why the virus still poses a risk to us. Some are quick to assume our worries are excessive, but our fear is valid, and our precautions are warranted.
For those of us with MS, a more severe case of COVID-19 is certainly a large part of our concern, but it is not the only factor. We know what living with a chronic illness means, and we fear living with long COVID on top of our already exhaustive list of MS symptoms. Take it from us: Chronic illness can impact every day of your life. As I enter public places, I continue to wear a mask to reduce my risk of contracting COVID-19. I continue to socialize outdoors and receive boosters as they are approved because any vaccine response is better than none. Those of us with MS who qualify for a preventative monoclonal antibody search for ways to receive this vital treatment that isn’t readily available. We can feel more protected with the administration of these antibodies, but the production has been limited and finding doses is reduced to pure luck.
When I wear a mask, it only protects me to a certain extent. Some patients with MS have children who attend schools where masks are no longer required. With very few students or teachers wearing masks, our children are now in a position of having to choose between wearing a mask to keep their mother or father safe or fitting in with the crowd, a decision they shouldn’t have to make. We, as parents with MS, may face an increased risk of COVID-19 because of it.
As the majority of the world returns to normal life, those of us with suppressed immune systems hope to be remembered. The help of our community is vital to our wellbeing at a time when a viral threat still exists. As the availability of more COVID-19 treatments become available, I hope that there will be a time when we can live fully again, despite the status of our immune systems. We are worn down from the pandemic just as much as the rest of the world, but letting our guard down isn’t an option just yet.
We need our friends, family, and extended community to help protect us so that we can all cross the finish line together. If we help others in their time of need, they’ll be ready to help us if and when that time comes. The world would truly be a beautiful place if we cared and showed concern for all, especially those who walk a path different from our own.
Lindsay Karp is a writer residing in the suburbs of Philadelphia with her husband and two sons. She writes about her long diagnostic journey and life with multiple sclerosis (MS) as well as parenting and other aspects of her life. She has recently entered the world of patient advocacy to help others living with MS and those who remain undiagnosed, as she did for many years. Lindsay is an aspiring published children’s book author and is working on a memoir of her 13 year diagnostic journey. Follow Lindsay's publications on Twitter: @karplindsay
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