I have spent more time in public in the last month than I have in two-and-a-half years. We were having some work done on the house, and I could not stay there in the midst of the noise, dust, and chemical smells. So, I relocated to a hotel in a nearby community for a few days, but I may as well have been on a different planet.
For the entirety of the pandemic, I have taken safety precautions very seriously. I am at high risk for severe complications if I catch COVID-19. My doctor said that my biggest risk is a worsening of my ME and disability. Friends, I am disabled enough. I’m willing to make a lot of sacrifices to avoid losing even more functionality.
Now that the vast majority of people have decided to live as if the pandemic is over, I knew that very few people in this nearby community would be masked. But I was not really prepared for what I saw and how I felt during my stay at the hotel.
No one in the hotel–including hotel staff–wore masks. No one on the street wore masks. No one in restaurants or coffee shops wore masks, including staff. All the restaurants were busy. Some had outdoor seating, but we were in a heat wave so not many of those tables were occupied. Inside the restaurants and coffee shops, there was no social distancing. In other words, it looked very much like the summer of 2019.
And here I was, wearing an N95 every single time I left my room. I had packed my own breakfast and lunch for each day, but I had to go out to retrieve dinner each night. When I walked into a restaurant to pick up my takeout order, the twenty-something hosts looked at me with a mixture of surprise, bemusement, and pity.
I’ve lived with ME for twenty-eight years, and I’ve gotten used to looking different. On good days, I walk with a cane, but other times I need a wheelchair. I’m used to pitying glances and inappropriate questions. But being the only masked person in an entire community in the midst of this ongoing pandemic made me feel extremely conspicuous and vulnerable. I felt unvoiced social pressure to blend in, to take off the mask, to relax.
I would love to ditch my masks, put on some lipstick, and go back to normal (which admittedly still doesn’t look like everyone else’s normal). To blissfully sit in a coffee shop for an hour. To enjoy a meal without checking how close together the tables are. My life was pretty sedate and simple before the pandemic, but during the pandemic it has been downright monastic. It would be a luxury to return to how I navigated the world in 2019.
Will this ever be possible? Will I build up enough immunity with enough booster shots so that eventually, catching COVID will be like catching a cold? Or will I have to wait until there are better treatments, and (hopefully) a way to prevent long COVID and the other long-term risks of COVID?
As I wrote for the Philadelphia Inquirer on August 22nd, I believe there is a smarter way to move forward collectively, and that it is to approach COVID as a community. After all, we take care of each other in all sorts of ways during rough weather conditions. Why can’t we do the same with COVID?
Maybe a day will come when I decide to give up on masks and take my chances. But not yet. If saving my life means being the odd one out and enduring funny looks, so be it. My life is still worth it.
Well said! And I’m right there with you! I’m experiencing the same disconnect. I’m still in this pandemic 100%. Those around me, outside my home, are not. I feel like I’m living in a different universe than them.
At least you and I are in the same universe together!
I hear you!
It’s really disheartening how people are just to emotionally/empathetically immature to care about anyone but themselves.
I don’t have opportunity to get out in public, but my husband works, shops & has recently gone back to performing live w his band. He double masks & we decontaminate everything & we are not swallowing the propaganda that everyone’s going to get this.
Im 90% bedbound & medically directed that the existing Covid vaccines have more of a chance of injuring me and helping me. Metabolically wonky and super sensitive to supplements and prescriptions.
His Bandmates are respectful & will test but are completely surprised & uneducated about his 2 corsi boxes & Israeli nasal spray we are using to do the best we can for him to not get Covid.
It feels like some dystopian movie that won’t end.
Thanks for sharing & hope we all stay well.
It is very much like a dystopian movie!
I am almost exactly like you. I also went for a short break to a hotel recently and I was the only person wearing a mask anywhere.
I have also lived a very monastic life throughout the pandemic and I continue to be relatively monastic.
Please be assured that you are not alone. Several of my friends are in a similar situation as well. I have had ME/CFS for around 33 years.
Thank you, Judith.
No worries. Stay strong and do what’s right for you.
Thank you for this, and the Op-Ed. We really have to encourage each other through writing and sharing things like this because it IS so hard to keep wearing a mask when you get the eye rolls and sneers. The days of mask mandates actually felt more liberating for me, that I could trust a bit more that I might stay safe in a public setting.
I agree! Masks and so on made it easier to be in the world.
Boy oh boy do I hear you. I’m in the exact same boat. Everybody around me (except my husband, who teaches at university) quit wearing masks. I go to the grocery store when it’s the least crowded. I only get takeout at restaurants or sit on outdoor patios. I went once at 2:30 in the afternoon when there was only one other patron across the room. I don’t care if people look at me funny, I’m not willing to risk being even more disabled than I am now. It’s already bad enough, thank you very much.
I appreciate you writing this.
Same here.
The rest of the world is perfectly okay with throwing us under the bus.
They think they’ll recover if they get covid – and that long covid must be a myth.
You can’t fix that kind of thinking.
I think they’re doing it on purpose.
I still wear a mask as well. At least in the grocery store, the few times I am able to go, I see the occasional person wearing a mask.
I feel your pain! I wear a mask to any public place and only eat outdoors at restaurants. but I let my guard down with close family and friends and then I freak out for 10 days hoping I didn’t catch it. Of course I miss my favorite restaurants and am tired of the same 2 places that have outdoor dining. In summer, it’s tough though! My husband owns a small retail shop and they are pretty much the only retail store in the county requiring masks. I am one of the reasons but my husband and his brother/co-owner are also terrified of getting covid. They lose a lot of business simply because these grown up babies don’t want to put on a mask for 20 minutes while they shop. A few people have threatened him or spit on their window, simply because they have to wear a damn mask to shop. The store even gives masks away to people who don’t have them Our minds are boggled. It is truly disgusting. I said to him just today, “People have NO idea what it’s like to be chronically ill.. None. If they did, they’d wear the damn mask.”
With all due respect, your doctor is incorrect. Please bear with me as I’m actually quite surprised by your take on this.
Think about it Jennie. When was the last time you had a real flu, let alone a real cold — with a real fever that burns off the bugs? We with ME/CFS never have those because of our immune dysfunction.
And masking has been (finally) proven to have little if not, no effect, especially outdoors, where I guess some people think the virus is just going to fly out of someone’s car and into their mouths. Florida, where they didn’t mask very much, had almost the same death rate as uber-masked-vaccinated California.
And lastly, there’s the fact that the vaccines, and the many boosters, have shown almost no effectiveness against the virus when we were told by Dr. Fauci in May 2021 that vaccinated people would become “dead ends” for the virus. Not.
I guess that I’m just surprised that considering the history our community has had with the CDC, you actually think they care about us.
Having said all that, I understand we probably will have to agree to disagree, and I respect your opinion.
You could not be more wrong about the masks not protecting us from the virus. My husbands owns a small store with tons of people inside and little ventilation. EVERYONE is required to wear a mask; a policy that loses them a lot of customers. Neither he or his brother/partner have contracted covid. All the employees who go out in public like indoor restaurants or clubs without masks? They have covid.
I’m with Jennie. I DO NOT WANT LONG HAUL. I don’t catch flus or colds often but I did get the swine flu several years ago. It was bad so I am capable of catching a virus.
1. The last time I had a real flu with a real fever was February 2020. If you were correct that people with ME were in no danger from covid, then there would not be so many ME patients who caught covid, let alone those who now have Long Covid on top of ME.
2. Masks work, especially indoors. https://www.cdc.gov/mmwr/volumes/71/wr/mm7106e1.htm
3. The death rate in Florida since the beginning of the pandemic is 374 deaths per 100,000 people in the population. In California, it is 241 per 100,000. As a percentage of covid cases, Florida has a death rate of 1.13% and California is .85%. I’m sure that more than masking habits contribute to the differences.
4. Dr. Fauci–and the vast majority of scientists–believed in May 2021 that the vaccines would provide sterilizing immunity. That was based on overconfidence in the data from vaccine trials and from early use in Israel and the UK. We all quickly learned that vaccination provides strong and durable protection from hospitalization and death, but not from infection. The primary vaccines and boosters provide a temporary boost in protection from infection, but that protection does wane over time. This is true of other vaccines as well. Dr. Fauci and other scientists have revised their opinions because they are following the data, as they should.
5. I do not believe that the CDC cares about people with ME. At all.
Some people in the ME/CFS community seem to not catch any of the common things going around, and others catch everything–both because of their unique immune dysfunction. Same overall ME, but different in this regard. Some studies have suggested there’s a shift after time, which may account for it, but whatever it is I’m one of the ones who catch everything despite excellent self care. My situation is due to low immunoglobulins and other genetic factors, but IVIG which could be quite helpful is not available to me because of our insurance even though my infectious disease and immunology doctors would both prescribe them, would have for the last ten years.
Slipping into ME began for me with mono as an adult, and this poor immunity followed. Genetic predisposition is only learned once a problem shows up–like never getting better from something even so common as mono.
So not only would it be bad for people to get covid and develop long covid, it could compound their risk for additional trouble with future pandemics. And likely there will be future pandemics because of climate change and world commerce and travel. I disagree about your take on masks and follow the guidance of my infectious disease doctor (Chia) and my friend who is a pathologist. The only places I might safely go are where people do still wear masks, which for me, sadly, is few places now.
My best to you, and I hope you continue to enjoy not catching other bugs. But please wear a mask in indoor spaces for people like me and so many of us in the ME community.
HUGS to you!
Because.