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By Carol Levy

I recently went to an Urgent Care clinic because the left side of my face — the side with the trigeminal neuralgia and phantom pain — was swollen.

Had it been the right side of my face, I have no doubt they would have prescribed antibiotics and sent me home. Instead, because it was the left side, it became a major issue of “What is it?”

That earned me another ride on the medical merry-go-round.

Urgent care recommended I see an otolaryngologist; an ear, nose and throat specialist. He did nothing for me, but did pronounce, “Yep, it’s swollen.”

My family doctor prescribed steroids, ordered blood tests, and a CAT scan of my facial bones. That was no help.

Next came a dermatologist who said, “No idea. See your neurologist.”

So I did. She ordered an MRI of my facial bones and more blood work. Again, all negative.

My GP suggested another otolaryngologist. The second one said she didn’t know what was causing my face to swell, but prescribed an antibiotic anyway.

At the next appointment, I was floored when she asked, “Has anyone else told you your face is swollen?”

That implied I was making it all up. Even though the swelling was obvious. 

Pain is not obvious.  Articles tell us not to exaggerate our pain or to pretend that we’re not in pain. The lesson seems to be to avoid stigma or judgement by not indicating one way or another if we have pain.

Is it any wonder then that we’re asked, “Are you sure it’s really that bad?” Or it’s suggested that we’re not really hurting, and could work or get out of bed if we really wanted to.

Being questioned about the reality of our pain is an awful discussion to have. We say we have it. That should be enough. And to some doctors, very few it seems, it is.  We say we have pain and they accept it.

Then, of course, there are the doctors whose philosophy is “seeing is believing.” Because our pain is often invisible to the eye, they refuse to believe us.

Until now, it never occurred to me that also applies when we go to a doctor with a normal everyday complaint. They still didn’t believe me, even when the swelling was plainly visible.

I still have the swelling. No one has figured it out. It’s just one more instance where a chronic pain condition interferes with getting the medical care that we need. And send us for another ride on the merry-go-round.

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.