By Carol Levy, PNN Columnist

Of all the possible repercussions of trigeminal neuralgia -- all the things it keeps me from doing because of the pain -- I never thought it could make me a possible danger to others.

But suddenly I am. Because I cannot wear a face mask.

Because of trigeminal neuralgia (TN), I cannot tolerate any touch to the affected side of my face. The weight of a mask not only causes that side of my face to swell, as though I had been punched, it causes severe pain.

I assumed that everyone with TN has the same issue, probably not the swelling, but definitely the increased pain. I went to our local online TN support group expecting posts such as, “I am worried. I can't mask. What should I do?”

But there was only one post with a link to an article entitled, “What to Do If You Can't Wear a Face Mask.” I was excited expecting answers, but it was not about what to do if you can't wear a mask — more about ways that you could wear an alternative facial covering like a bandana. Nothing about medical or psychological issues that make wearing one difficult.

The article concluded with a list of 3 groups the CDC says should not wear a mask: Toddlers and babies under the age of 2, people with a health condition that causes trouble breathing, and those who can’t remove a face mask without help.

Omitted completely was any mention of medical issues like mine or those who cannot tolerate the touch of a mask against their skin. Don’t fit it into any of the 3 groups? The advice from an emergency room nurse was to stay at home as much as possible, rely on delivery services or loved ones to get essential items, and only go out when you won’t encounter other people. 

That’s good advice. But I, like many seniors and the disabled, have no one to do my shopping or other errands for me. I don’t have the funds to go the delivery route and I can’t go out at night, because my cataracts make night driving dangerous.

So I go out during the day. I made a t-shirt which reads, front and back, “Can’t mask due to medical issue. Trigeminal neuralgia.” Thankfully, people have been very nice to me, with one person even saying, “I am so sorry you need to wear that shirt.”

Recently, I went to a farmers market. A woman looked at me and got visibly excited. Instead of a tongue lashing, she said, “You have that? So does my husband.”

We had a nice conversation, but for all our similarities, he was able to mask. Which takes me back to my first point.

How often have we lamented that no one understands? That our families, friends and colleagues don’t accept why we so often have to say ‘no’ to extra work, a day at the park or other invitations?

Because of the masking issue, I learned maybe we too don’t always understand. I have seen people in support groups question someone else's report of their pain, how it feels, where it is located, and how they experience it. I never quite understood how anyone could question someone else's pain report.

Now I get it. Our diagnoses may be the same, but our pain experience may be very different. Mine may well not be the same as yours in how it feels, how I experience it or how it manifests itself in my body.

This was a new and important lesson for me. About the only time I can say, “Thank you, coronavirus.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.