How can I make them understand?

How can I get my spouse, coworker, boss, friends, or family to understand? This is one of the most common questions I hear regarding the nature of trigeminal and glossopharyngeal nerualgias. The answer, regardless of who asks it, is the same. You cannot make someone who has not contended with this type of pain to "get it."

You can, however, ask them to accept the reality of your situation. Before we discuss that, let us talk about why we should concentrate on their acceptance rather than their understanding.

We ask the people around us to have empathy for us, to put themselves in our shoes. I ask you to do the same. Remember when you had never heard of trigeminal or glossopharyngeal neuralgia? Such pain would have sounded incredulous, and indeed it is.

In all my conversations about these cranial nerve disorders (before, during, and after my working at TNA, the Facial Pain Association) I have never told anyone about my first exposure to facial pain. I was young, in my 20's. I was eating dinner at a friend's house, hanging out in the kitchen with another guest. She explained that she had a nerve in her face that caused her horrible pain when she...

I have to use an ellipsis in the previous sentence because I cannot remember what she said after that. Although she spoke with a calm demeanor, her message terrified me. I left the kitchen, telling myself that she must be crazy. I hoped she was. To believe she might be sane meant that this horrible thing could happen to anyone, even me. I refused to entertain the possibility. But now I ask myself how many people walked away from that perfectly nice woman, leaving her alone as I did.

When we ask someone to accept our situation, we are asking them to do something easier than to understand. We apply the formula from the movie What about Bob? Baby steps, baby steps. Let us discuss some of them.

Present the individual with a concise explanation of trigeminal or glossopharygeal neuralgia, depending on which disorder(s) you have. For people who have atypical or neuropathic facial pain, find the most definitive information you can. Be selective, using information that describes your symptoms. Do not give more than a full page of text to read. Allow them time to digest it. Then expose them to factual presentations of personal experience.

Find an audiovisual presentation. These are on YouTube and other sites, such as The Facial Pain Association's. Attend a webinar or support group meeting together. If possible, go to a conference hosted by TNA, the Facial Pain Association or a similar group.

Some people will refuse to accept the plight of an individual who has facial pain, even if they love the person who has the disorder. Hardheartedness is not something we can change in another person.

Counseling, if he or she will go, can open the door for acceptance. If you pursue this route, go alone first to ensure you have an empathic counselor who will research and accept your disability. Make sure he or she knows how to pronounce it. It can provide some validity for you.

Everyone who has facial pain needs an advocate. It does not have to be someone who understands, but it must be someone who accepts.

I would like to hear from you. Please tell us what helped someone accept or understand your pain.

God bless you.

Have you visited my website?

A no-chew recipe: shrimp and corn chowder

I made this recipe with things I had on hand. It is an easy one.

15 ounce can of creamed corn
juice from 1/2 lemon
1/2 teaspoon minced garlic
1/2 tablespoon butter
1/2 onion, diced well
1 1/4 cup chicken stock or broth (may also use fish or vegetable stock)
1 1/3 cup lowfat milk
2 tablespoons nonfat Greek yogurt
1 cup cooked, peeled, deveined shrimp, chopped into small pieces
4 whole shrimp (optional) for garnish
1/2 teaspoon xanthan gum (optional) to thicken soup
1/2 teaspoon of sea salt
1/4 teaspoon black pepper
1/4 teaspoon ground rosemary
Makes 4 eight ounce bowls

Heat the butter in a pan and add the onions. Cook until translucent. Add the can of  creamed corn. Squeeze the lemon juice into the mixture.

Measure out the chicken stock. If you like your soups thick, add the xanthan gum before you heat the broth.  Stir it well, until there are no lumps in the mixture. Add it to the other ingredients and stir.

Add the remaining ingredients (except the whole shrimp), stir, and cook on medium heat for about 5 minutes. Keep a close eye on it, and then bring the heat down to low. Cook another 30 minutes. Keep the lid on the pot, except for stirring occasionally.


Once the soup is ready to serve, garnish with a whole shrimp. I also used a lettuce leaf from a bag of prepared spring mix lettuce. Garnishes are important. Even if we can't chew it, it still gives us the feeling of eating something special.

Even on a hot, humid July Florida day, this chowder was not too heavy. It's not high in fat, but it has protein. It isn't easy to get that in a no-chew diet. I used Lactaid milk in mine, and it tastes fine for those who like to watch their lactose intake. Hope you like it!

Be sure to search my blog for other no-chew recipes.

Loss Part 3: Identity

Do you ever feel as though you are sitting on the sidelines of your own life? It's not unusual for people who experience pain and disability to feel as though they have somehow lost themselves. I remember not wanting to believe that I had changed, but I had. Many of my strengths had turned into weaknesses. Some of my abilities had become disabilities. I was in the middle of my life and didn't know where to go or what to do next. All I knew was that I didn't want to stop but had to. I loved teaching drama, but I had to let it go.

Quick wit, the ability to concentrate, and physical prowess can seem to evaporate if the pain comes to stay. Medications to help facial pain can cloud our concentration, obscure our ability to respond quickly, and cause physical issues such as balance and sluggishness. Career and volunteer activities may become a drain instead of a challenge.

If we have trigeminal neuralgia, neuropathic, or orofacial face pain, we may begin to experience social isolation. This can be spurred by the environmental barriers that are unique to people with face pain: breezes that cause electrocution-type pains and noise or vibration that causes the pain to strike. Isolation and loneliness can also be caused self-consciousness. Some individuals gain weight with face pain, especially because of some of the medications' side-effects. Others may be unable to brush their teeth or receive dental care on a regular basis.

Things that seemed so intrinsic - like a beautiful smile- now seem to escape us, things like a career or a desire to grow a family. The losses caused by pain can be distressing, but there is hope. Hold onto it. Don't let go.

Finding the best treatment takes a while because of the idiopathic nature of the pain. What works for one person doesn't work for another. Medications that seem to turn us into "zombies" also require a period of adjustment. Ten years ago, when I started taking an anti-seizure med, the trigeminal neuralgia pain left. I slept like crazy for three months. Then the feeling of sleepiness left, and the pain stayed away. (Can I tell everyone how disappointed I was when I developed an allergy to this medication?)Another thing that takes time is prayer. We normally don't get answers overnight. A period of waiting is almost always involved. Hold onto hope. Hold onto your faith. Continue to wait.

Waiting is one of the most difficult things we can do. Being in limbo places even more pressure on an individual who has experienced so much loss. It is important to remember this: we have changed but we have not lost ourselves. We have not become someone else.


The challenge we face is learning how to make the best of our lives after we have experienced losses associated with facial pain. There are many ways to do that. One way is to address career concerns. Every state in the U.S. has a vocational rehabilitation program that receives federal funds. It's there to provide education or training for people who have disabilities. People with face pain qualify. Because trigeminal and neuropathic facial pain are rare, you might want to prepare information for the rehabilitation counselor who will interview you. Make a list of things that cause you pain, such as talking, sitting in air conditioning, or being in a noisy environment. If you are having issues caused by medication, list those also. If you are employed and want to stay with your company, the Job Accommodation Network (JAN) can help you and your employer make arrangements to help you stay where you are. JAN is part of the US Department of Labor. They have a website and a toll-free number.

One important thing to focus on is what you can do, not what you cannot do. I've been in situations that were overwhelming. It's hard to recognize the need to make a change. Letting go doesn't mean losing. It can mean that we are going to find a new and better way.

Call me crazy, but I think the world would be a better place if everyone were to experience trigeminal neuralgia for just one day. We'd live on a more compassionate environment. We'd have more empathy for others. People with face pain have learned how precious life is. It's something we can teach others. Even in the midst of our pain, we can help make the world a better place.

I want to thank the Lord for answering so many of my prayers. When I lose one thing, He always gives me something better. It takes me a long time to recognize the blessing, but it is always there.