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?

Conversations with Job: suffering, accusations, and integrity

This past week, I've been reading the book of Job, a Biblical account of a good man who lost everything, including his health. Job's life turns upside down overnight, a riches to rags story.

When I consider Job's tremendous suffering, I think about people who are dealing with trigeminal neuralgia. Many have told me they relate to Job's situation because the pain from TN is so tremendous. I remember feeling the same way, years ago.

Facial pain can steal the things we cherish. People who are at the top of their game turn to focus on finding relief: an accurate diagnosis, a medication, or a procedure to erase pain.

In spite of the provisions the government has made for people with disabilities, individuals who have trigeminal neuralgia and other types of face pain sometimes lose their jobs. It's couched as "restructuring," or blamed on "this economy." After all, corporate America must abide by the Americans With Disabilities Act.

Friends and family sometimes expect us to "get over it" and get on with our lives. When we can't, many of them retreat. Some of Job's friends, if they can be called that, accused him. They told him that his misfortune was caused by his own actions.  Zophar tells him to leave his sins behind and to confess them to God. In other words, get over it and get well, Job.

When I got sick with trigeminal neuralgia, some of my friends looked for a spiritual cause. Was I dabbling in something I shouldn't? Was my husband in business with someone immoral? Did we live in a house with a violent history? The possibilities seemed endless. Maybe someone has intimated that you are somehow responsible for your pain.

Handling accusations of this nature is tricky. We don't want to be deserted or alone. Yet critical rhetoric can make the anguish of pain even more intense. How can we respond? With his body practically decaying while he was alive, Job blamed no one, not himself or God.

Job's buddies missed his money, his prestige. But Job's integrity remained intact. He stated that we can't take it with us and refused to dwell on his material loss. But his health was another matter. Physical suffering cannot be denied. It's the ultimate thief. And it was the most difficult loss for Job.

Later Job's health and wealth were restored. You may have suffered so long that you no longer believe you will have a life again. Have faith that you will get better. If you need counseling to help you regain hope, find a practitioner who is experienced in counseling people with chronic pain.

Without hope, it's difficult for people to overcome pain. Don't blame yourself for disability. It's not your fault.

For more information about The Americans with Disabilities Act and facial pain, please see "disability and loss" on my website.

Opening up

Most people who have trigeminal neuralgia and other types of neuropathic facial pain have experienced quite a bit of rejection. It happens because people who have not experienced such mysterious and excruciating pain find our explanations to be incredulous. They just can't believe it's possible.

Here's something else to consider. If this is terrible thing happening to someone else, it could happen to them. Denial is easy.

Think back to your earliest days with this disability. Was it difficult for you to believe that such pain could come out of nowhere? So difficult to describe? Mere talking can cause the electrocution-type pains to erupt, making it easier and easier not to talk about the terrible predicament.

We withdraw. We go into our own world, and we feel alone but we aren't. It's not just us and the television.

Today I am watching Julie and Julia, a movie I've seen before. I've seen it before, and I love the story. Julie blogs away while she works through Mastering the Art of French Cooking by Julia Child. She starts with no followers, but she quickly gathers an audience. It's the beginning of Julie's success.

If we take a look back, though, we see that she opened herself up to anyone who had access to a computer and could read in English. That's risky, and it's what we bloggers do.

When I wrote With Great Mercy, I opened myself up, telling how I thought the Lord had forgotten me, and then later learned how He much He cares. I really hadn't known the extent of His love until I reached out for His mercy.

At the time I didn't know others who have trigeminal neuralgia, but I knew they were out there. If I wanted to write something to help others, I would have to be transparent. It's a scary thing, but transparency is makes someone believable. The author's authenticity gives the reader someone to relate to. 

If you have no one who understands the depth of your pain, I encourage you to open up to someone. Step out of the box of isolation that often defines the world of someone who experiences so much pain. There are ways to do this: a support group, a prayer group, or a professional counselor. If you don't have a trusted friend, feel free to contact me via email.

Trigeminal neuralgia turned my life upside down. It turned a drama teacher into a rehabilitation counselor, and lukewarm Christian became one who wanted every day to get closer to God.

Has illness caused your life to change? Did something good result from it?

Trigeminal neuralgia, orofacial pain, and anxiety

If you have trigeminal neuralgia, neuropathic or atypical face pain, or orofacial pain, chances are that you have experienced anxiety. Some people think of anxiety as nervousness or a feeling of panic. It can escalate when negative thoughts or "what ifs" become frequent or won't go away. It's important to mention these feelings to your physician or medical practitioner.



Face pain can storm like a thundercloud, bringing "what ifs" into our lives. It's really important to recognize anxiety when it begins to manifest itself. There are a number of things that can be done.

Your physician may want to prescribe an anti-anxiety medication. If you are hesitant to take medication for anxiety, you may want to see a counselor who can help you with cognitive behavioral therapy (CBT). CBT works for many individuals because it helps them train their thought patterns and does not introduce more medication into the body.

We hear a lot about "natural" approaches to illness. Some people get relief through massage or other types of integrative medical techniques. Herbal remedies are also sometimes helpful. Sometimes seeing an upper cervical chiropractor (UCC) can also help with anxiety as well as the face pain itself.

Addressing anxiety is important. These feelings sends signals to the brain, and they can actually trigger more pain. Anxiety is common to people with facial pain. You're not alone in this journey. God bless you.