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?
With the help of some TN sufferers, I made a video to try to 'explain' our pain. It's on facebook and also on you tube. It's called "Faces Behind the Pain" If you search you tube for that with Trigeminal Neuralgia, you will find it.
ReplyDeleteI could link it here, but I might be looked on as spam.
Thank you, Liz. I'd like to include the link here. I'll make sure it get's published if you want to send it to me.
DeleteI recently was diagnosed with TN. From what I have, my diagnosis is similar to many and came after going to a denstist and periodontist for tooth pain. My symptom (torture in the literal sense) was experienced as if my head was in a vice and the master torturer would tighten the vise without mercy, effecting all three nerves on only one side of my head. The master toruturer would then release the vise, give me a brief semi reduction of pain before tightening the vise again. This would continue for hours at a time.
ReplyDeleteSo, what help me to make others understand? I told them right off, I would not make the same mistake when I was experiencing symptoms of MS. It took me a least three years to accept my limitations (mind said yes, yes - body said, oh no you don't)and I was not going to go though that again.
So it really didn't matter as much, because I accepted this reality to me. And I told them that. I find being honest about the pain, and asking them to discribe the worst pain they ever experienced, helps.
My sister told about child bearing and how they gave her four shots for the pain. And that only took away the highest edge of the pain. I told her to experience it again, but this time to imagine taking all four shots at one time and it was like taking a sip of water for the pain as the pain kept on increasing and increasing. I think she got it.
I am in remission right now, and pray it does not return. I experienced three weeks of ever increasing pain. I found pacing while rubbing my arms, trying my best to keep calm and not focus on the pain helped me get through. For me it was complete torture.
Blessings...
Bob, thank you for sharing your experience and suggestions with us. I am grateful that TN is in remission, and I am saying a prayer that pain will not return.
DeleteHow did you get into remission?
DeleteBy faith, prayer, and a tremendous amount of support from my mom. Bless you, Kim. I just now saw your post.
DeleteThank you, Kathy. The more prayers the better.
ReplyDeleteIt's my pleasure, Bob. I am hoping my blog will be helpful to you. Take good care.
DeleteWell, after 8 days of nearly being pain free, I got hit again this morning. It came on fast and hard. I had to go to a medical center to get pain meds because it was Sunday. It is funny how doctors alway want to change what has been working. That alone get old.
ReplyDeleteWhat happen was I forgot to take the med I was prescribed last night and learned that I best not skip even one dose!
I guess this is the way it is going to go, attacks will come and come out of the blue. These attacks really wipe me out!
Bob, I am sorry you are having tremendous pain again. I'm no physician, but as a rehabilitation counselor, I agree that it is better not to skip a dose of your medication. I am hoping you will find good rest today after being "wiped out." God bless you.
DeleteIt's always great to hear from you.
Just found your website and heard about your book. One of my direct reports at work has TN, as does one of my peers. Having never heard of this, I want to be the best support possible to both of them, and reading your site has helped me begin to understand. It is very difficult being the "boss" of someone struggling with this ~ I want to make every exception in the book for her, but find that in the corporate world my hands are tied. She is very emotional, leading to many conversations and much energy expended trying to help her see that she has not "failed" me or the company by having TN...my heart goes out to her as she has bravely and courageously continued trying to put her job and her family first in spite of the pain...please tell me from your point of view how I can help her get through this....both of them....
ReplyDeleteIt's encouraging to receive your comment. You are right: it is difficult to watch someone struggle with these symptoms. As far as how you can help, making every accommodation possible is the best way. Your empathy for her impresses me. She may have some triggers that seem incredulous, such as sitting near or under an air conditioner vent, noise, wearing glasses.
DeleteI understand that the corporate world is sometimes inflexible, but she does have allowances under the Americans with Disabilities Act. Because stress is such a tremendous trigger, it is imperative that she realizes you have empathy for her.
Make sure you read the blog entry "face pain and emotions." It's the pain first. Emotions are secondary to the pain. This lady has lost a lot, but she is blessed to have you as a supervisor.
God bless you.