For me, a mask is more than a representation of the pandemic. Masking is my future. April is Sarcoidosis Awareness Month so I thought I would spread a bit of awareness about mask-wearing and break the stigma for those of us diagnosed with Sarcoidosis or other immune-compromising illnesses.
I was diagnosed with Pulmonary Sarcoidosis in 2001 and that diagnosis took a solid year to obtain. Many of you know how difficult it can be to receive an answer to “What is wrong with me?” When I was finally diagnosed, I was “Stage 4.” Said differently, “End Stage.” I count my blessings every day because I am writing this 20+ years later.
I chose the typical treatments at the time- mostly steroids and antibiotics. I was hospitalized 3 times with “pneumonia” and did not work for nearly 2 years. During the second year of my illness, I decided to ditch the meds and go for a holistic lifestyle. I went on a modified version of the anti-inflammatory diet and have, for the most part, been on this diet for 20 years. Of course, during acute flares I have occasionally had to do a round of medications. My inflammation and symptoms go well beyond my lungs and on most days, I am fatigued. But, with that said, I have been able to maintain my health, forward my career and experience quality of life.
When the pandemic hit, I was probably not alone with my internal panic button sounding the alarm. For years, I played dodge ball with the flu and even the common cold. A simple cold could cause pulmonary complications, so I decided early on that my work had to be adaptable and flexible. I never wore a mask even though my doctor encouraged me to do so any time I traveled by air. I didn’t wear the mask because in my younger years, I was embarrassed, and well, the mask is uncomfortable.
Enter COVID and my attitude began to shift. During the first year of the pandemic I isolated, had groceries delivered and did not attend social functions. Since I work from home, my work continued without disruption. Into the second year of the pandemic, I new I had to get out, enter a grocery store and get used to wearing a mask. Again, I am sure I am not alone.
Now I do go to small gatherings, to small outdoor events, to grocery stores and retail outlets. I am still not ready to sit in an auditorium though I miss plays and concerts. I miss going to church but the same applies. Wearing a mask is uncomfortable and after 1 to 2 hours with a mask on, the joy of the concert, play or church service loses its luster. I know I must always wear a mask now when in crowds. That has become a non-negotiable. I am just choosing where I go and considering all factors when I venture out. Because, again, I know now that if I am in public and with strangers I must wear a mask.
My allegiance to mask-wearing is not due to the pandemic, though I think the pandemic gave me pause and as I approach my 60th year, considering the advanced stage of my disease, I realize I must wear a mask to support my optimal health. While I hope the pandemic is waning, the cold and flu are still viable infections that I will do whatever I can to avoid.
A year from now if you bump into me in the grocery store and I am still donning a mask, please don’t assume it is because I am COVID scared. I choose to wear a mask because I continue to manage a disease that requires me to be diligent on a daily basis. But I may also choose to turn down an invitation if it means I need to wear a mask for a long period of time. And as I write this, I am fortunate to be an introvert. I do miss the social contact. I can’t imagine what the pandemic quarantine must have been like for some. For me, I think the pandemic forced me to face the fact that as I grow older and continue to progress with this disease, I have to modify my lifestyle as necessary.
I am no longer embarrassed. I am proud that I have taken good care of myself all these years, and also realize anything can change on a dime. That just means I have to do my part with self-care and masking is part of the regimen now. So is my disability placard. And I am not shy to ask for accommodations when necessary. I remember when using hand sanitizer became the norm. Now so is wearing a mask. At least for me.
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