March 15th is Long Covid Awareness Day. A day designed to bring awareness to a syndrome that by medical standards is very new and unfortunately, still very much a medical mystery. So far, there are over 200 symptoms of Long Covid, which is why I always say, “If you know one person with Long Covid, you know one person with Long Covid.” The symptoms, severity, duration, etc of the syndrome is different for each and every person. Also, the comorbidities that come along with Long Covid are different for each person. I have POTS, ME/CFS, mild-moderate memory/cognitive issues, and a whole host of vision conditions.. all a result of Covid. It’s the gift that keeps on giving.

I’ll be honest that it’s weird to have a syndrome that has an awareness week, a ribbon, merchandise, and advocacy groups. For whatever reason, it makes it feel more real. A strange thing to say I realize as you would think it would be real everyday since I live it everyday. The doctor’s appts, therapies, symptoms, etc have just become part of daily life at this point that I don’t think about them.. they just are. There are moments, almost 3 years into this unexpected journey, that still stop me in my tracks and the reality of all of this comes flooding in and I realize that the last 3 years have not just been a really crazy, messed up, horribly written Lifetime TV movie, but actually my life.

I don’t often talk about the statistics related to Long Covid because I think numbers are boring and numbers don’t tell the human side of the story, but I recently read an article that said “As of March 2024, about 17 million people in the U.S have Long Covid.” That’s 17 million individual stories of loss, illness, grief, loneliness, isolation, confusion, etc.

I’ve often had people tell me that my strength and resilience on this journey are inspiring and while those words are incredibly kind, I often get uncomfortable with such sentiments and don’t know what to say because for me there hasn’t been any other choice. I didn’t choose any of this, but I learned early on that I could choose how I responded. I could choose to give up or I could choose to fight and carve out a life. I could choose to laugh at the crazy symptoms. I could choose to still be kind. I could choose to take each day as it comes. I could choose to confront my grief. I could choose to let myself fall apart and come back together. I could choose to find beauty in the brutal. I could choose to really look in the mirror and confront long held beliefs about myself that complicate an already complicated journey.

My deepest fear through all of this has been that this journey and these illnesses would cause me to become a person who is bitter and angry at the world. Have I had bitter and angry moments? Oh yes, I have. Are there moments where I scream with rage at what has happened to my body and my life? Absolutely. Have I had moments curled up in the fetal position sobbing? You bet I have. There is no playbook for getting through something like this and so I have had to write the playbook myself. To figure out what works for me and for my body. It has been and continues to be trial and error. I am not an expert and I don’t see myself as resilient and/or strong. I see myself as a human being thrust into an incredibly unexpected and difficult journey who is just trying to do the best she can each and everyday.

I also think it is important to acknowledge that those with Long Covid, chronic illness, and/or any challenge in life that have chosen to respond in a different way are allowed to do so and are just as strong and resilient. Everyone gets to choose their own path and none of us get to judge the path another chooses. Yes, that’s incredibly hard to do to not judge, but unless you are living in someone’s body you don’t know what they are feeling, thinking, dealing with, etc and you can’t judge what they do or don’t do. It’s easy to stand on the outside looking in and think to yourself how you would handle a chronic illness or other life challenge, but you don’t know until you’re in it. I have learned that there is no best way to deal with chronic illness there is only the way that works for each individual person. I am not a poster child for chronic illness and the way I deal with my chronic illnesses shouldn’t be held up as a comparison or a model for anyone else.

I know there are those out there who say I am too open and talk about my illness journey too much and they are entitled to their opinion, but I think we live in a world that is incredibly grief avoidant. We don’t want to see people’s grief, people’s struggles, and people’s illnesses. I think that leads people who are dealing with grief, a life struggle, and/or an illness to feel shame and as if it’s something that needs to be hidden. My intention in being so open is to raise awareness and to change the narrative around grief and illness. To change the narrative of what “sick” looks like. To break down this idea that to be accepted one has to hide their scars and their wounds. To change the narrative around this fear of grief as if grief is a communicable disease one can catch if they are around someone who is grieving.

So in honor of Long Covid Awareness day I will continue to be open and honest about this journey. I will continue to confront the narratives from society of what “sick” looks like. I will continue to remind myself that right now healing and managing my symptoms is my job and it’s the hardest full time job that I’ve ever had. I will continue to grieve openly so that others who grieve know that they don’t need to hide their tears, scars, or wounds. I will continue to live, love, be kind, get angry, cry, make mistakes, unintentionally hurt people’s feelings, say WTF multiple times a day, laugh until I snort, sing, move, be fluent in sarcasm, and beg for a puppy.