It has been five years since my face collapsed on one side and an emergency room physician diagnosed me with Bell’s palsy. The illness came on suddenly and unexpectedly. I woke up one day, and the left side of my face looked swollen and felt numb. I thought I was having a stroke or a mysterious allergic response and rushed to the hospital. Despite my 30-year career as a medical writer, I had never heard of Bell’s palsy until my diagnosis. Yet now I know it inside and out.
Bell’s palsy is an inflammation of the seventh cranial nerve that runs from your brain and skull and then to multiple branches in the face. This cranial nerve controls the use of your facial muscles. In Bell’s palsy patients, the nerve becomes inflamed or damaged, so that the muscles in your face—often just on one side—no longer work.
At first, I couldn’t blink often enough or close my left eye, and as a result it became incredibly dry as I lost the ability to make enough tears. Some days, I felt as if there were scratchy grains of sand on my eye, and I had to tape my eye shut at night to avoid corneal abrasion. My spit partially dried up since the facial nerve controls two of the three glands in the mouth that generate saliva. I couldn’t really smile or raise my eyebrow on the affected side; one side of my face looked droopy and was not symmetrical with the other.
The cause of Bell’s palsy is unclear, although scientists think a virus may bring on the disease. Stress may be a contributing factor. Antivirals and prednisone—an anti-inflammatory medicine—are the treatments for two weeks. After that, the only thing to do is rest. Some people swear by acupuncture and massages. Most people with Bell’s palsy recover within six months, but others may have it for years. I am one of those unlucky people, and this illness has been an unwelcome but constant companion for the last five years.
It is not just the facial and eye changes in Bell’s palsy that are disturbing. The cranial nerve runs through the eyebrow, the jaw, and along the cheek so the illness may cause considerable pain in a minority of cases, such as mine. There are medicines that can control that sharp pain, but they have side effects, including fatigue and balance problems. In the first months after my diagnosis, I would get up, try to work, and find myself falling asleep at my computer. I had to concentrate to make sure I kept my balance while walking and now use a cane.
I have recovered quite a bit, but not entirely. People tell me my face is more symmetrical. I still can’t lift one eyebrow all the way, and my smile is lopsided. My lips distort a bit when I speak, although my words are clear. One eye looks smaller than the other due to a droopy eyelid, although you can’t tell if you don’t look closely. I also get headaches and cheek pain many nights, which I can’t always alleviate with the medicines I take or by using my purple heating pad that I microwave precisely two minutes. All these things remind me of how my body has betrayed me.
The average recovery time from Bell’s palsy is long—six months to a year. If you are over age 50, as I am, total recovery is less likely, and the recovery can be slower. The speed of recovery also depends on how severe your symptoms were at the start—since that’s an indication of the degree of damage to your facial nerve. Nerves are slow and difficult to heal. “Rest and don’t get stressed” is what my primary care doctor said. Ha!
Her response seemed bizarre to me, since I was dealing with a condition that distorted part of my face and caused regular pain that required strong medication. Just these circumstances alone made ongoing stress a regular part of my life. Her advice felt useless and demeaning too—as if it was my fault that I hadn’t healed: I only had to meditate or pray or take more naps and voila, I would get better. I called my cousin, a doctor and retired hematologist, and she agreed the physician’s advice was absurd. After joining an online Bell’s palsy support group, I found that many patients encounter bad advice or just plain lack of knowledge among physicians.
My doctors also tell me that there is not much that will help prompt further recovery. I spoke to a head and neck surgeon who explained that he could inject Botox to “freeze” the muscles on the good side of the face. Apparently, this side of the face overcorrects and does more work once Bell’s palsy hits, so “freezing them” helps give them a respite, and makes the face appear more symmetrical.
I watched a video of this therapy, and it looked quite painful. Plus, it only lasts for a few months. Sorry, not for me!
Like a lot of people with a chronic illness, I once was a sucker for every possible remedy under the sun. I bought vitamins that were rumored to help, rubbed essential oils on my temples, eyebrow, and jaw, causing my cat to flee the room. I even tried a dropper of CBD oil, but it made me feel like a drunk, since I already take some antidepressants that can be sedating.
At first, when I was in a social situation and I talked about my Bell’s palsy, I felt the room withdrawing from me. Was it that people had difficulty hearing about it and were uncomfortable with disability? Or did they sense my anger and bitterness underneath it all? People would stare at me, wondering what was wrong, and they would ask what happened. Others would stare but seemed afraid to ask questions. I was resentful of these reactions, and of the fact that the minute I got Bell’s palsy, my world began to contract.
When I was first diagnosed, friends were solicitous, asking what they could do. They brought over food and cooked for me. After a month or so, all but the closest friends and relatives stopped calling. I also drew inward and became isolated, preferring to spend my time listening to book recordings, or later, reading books, because I faced no awkward questions or rejection from anybody that way.
Since developing Bell’s palsy, I realized that if I wanted help, I needed to ask for it. I’m proud and a little bit stubborn, so that’s not always easy for me to do. More recently, I’ve started to fight against isolating myself. It’s my natural tendency since I’m shy, but I’ve come to realize that I thrive on the company of others. These days, I’m now socializing more—even if it’s just on Zoom.
Most people don’t realize how much chronic illness can impact your life. Now that I have been through a Bell’s palsy diagnosis, I understand disability more. In that way, my Bell’s palsy was a gift. It helped me understand what chronic illness can do to a life, and the importance of reaching out to others.
I discovered that I could be a health advocate for myself when dealing with doctors. I started writing a mystery novel, and the heroine is a journalist with Bell’s palsy. There are times when my confidence fails in social settings, but there are also days of joy when I smile widely—just a little crookedly.
