A few weeks ago, I asked my social media followers two questions to help me write my posts for Facial Pain Awareness Month. The first was, “What would you like people to know about trigeminal neuralgia?” You can find some of their answers in this post. The second question was, “What is the most difficult part of living with facial pain?” Today, I’m sharing their answers.
One thing that stands out from their responses is just how complex living with facial pain can be. There isn’t just one difficult part. It affects people in different ways, and often in more ways than one.
The Most Difficult Part of Living with Facial Pain
In no particular order…
Facial Pain Can Be Relentless
For some people, facial pain can be constant. My own pain is like that — the only variation is in the severity.
“Nobody sees the pain you’re suffering, so they don’t realise how absolutely relentless it is. It’s so wearying, and nothing helps.” — Regina.
“I think the most difficult thing about living with facial pain is it’s relentless, and you never get a break. Having it is exhausting, and yet you can’t even relax because the pain is always there.
I have persistent idiopathic facial pain which I think may be similar to TN2, but I wish just more people were aware of facial pain in general. It’s hard enough learning about it when you get it, but even harder trying to explain it and its impact to other people.” — Jimmy.
Jimmy has been raising money for research into better treatments for facial pain for the past two years, with the money going to the University of Newcastle Dental School. He has now created a petition in the hope of persuading politicians to direct funding towards facial pain conditions.
If you’d like to help Jimmy raise awareness of the need for more research into facial pain, please consider signing his petition.
Difficulty in Getting a Correct Diagnosis & Dealing With Medical Gaslighting
Not getting a diagnosis quickly is awful, but not being believed, or even being belittled, can be a form of medical gaslighting. And that, unfortunately, is a familiar story.
“For me, getting a diagnosis took such a long time. I went between my GP, dentists, and any other doctor willing to listen. Unfortunately, not many were.
I was told “some people just get pain like this,” as though it was acceptable to live with. I was told to “just take paracetamol,” and always felt as though I wasn’t believed. Eventually a new dentist believed me and had an explanation — “Your teeth are fine. Your pain is coming from a nerve in your face.” I was diagnosed after that and began a long journey of finding the right medication to help.” — Liz.
“Nobody believes how bad it is! Gaslighting. When I say it’s bad, I mean it’s bad!” Lorna
“I have been made to feel as though I was making it up and as though I was a drug seeker by hospital doctors and nurses.” — Julie.
“I was left in horrific pain for weeks because a doctor simply didn’t believe me, and wouldn’t refer me to someone who could help. He told me it was toothache, even though the dentist said my teeth were fine. I eventually paid privately to see a neurosurgeon.” — Sue.
Eating and Drinking Can Be Extremely Difficult When You Live With Facial Pain
Facial pain can make eating and drinking incredibly difficult. Electric shocks in the mouth or pain that feels like a dental abscess can make chewing, biting and even touching a glass to your lips unbearable. Food choices are often restricted to soft foods that are warm rather than hot or cold, as either extreme can trigger the pain. Even drinking water or swallowing medication can be almost impossible.
“The most difficult thing for me has been drinking water. You are literally afraid to touch that glass of water to your lips. You know it will shoot off a round of burning pain. You may even have to lie down and endure until it slows. You cannot drink from a straw; that takes lips and sucking.
Dehydration just causes more problems with more pills and, yes, more gulps of water. I have had surgeries, I take pills, and for 47 years I went to work 7 days a week carrying that rag around so I can push on the pain when I talk and wipe the tears away.” — Michael.
“I was in danger of dehydration, but could not put the glass to my lips or suck through a straw to drink any water. Consultant warned me that I must have water and sent a prescription for lidocaine spray, but I couldn’t even get that into my mouth. The pain gradually subsided after a day or so. Now the fear of flares is real & ever present when in remission.” — Kathy.
More triggers that can make life difficult.
Exhaustion
Living with persistent pain can be debilitating and exhausting. The pain itself takes its toll, as do the mental and emotional challenges that come with it. Medication can help manage the pain, but it can also cause side effects such as tiredness or sleeplessness. Living with facial pain brings so many challenges — it’s about much more than the pain itself.
“Feeling both mentally and physically exhausted from doing nothing. The body feels like it’s in survival mode all the time. I have type 2 TN; it never goes away, and when I’m in a vehicle, the vibration from the road…boy oh boy. It gets much more intense and you cant just stop and get out to wait for it to subside. I have to have a very deep sleep for it to calm down.
It is so much more than just shocking the face, the jaw gets tight, the facial muscles won’t relax — they stay flexed.” — Marie.
“It’s more than tiring living with this. It wears me down. It’s hard to function. Maybe a good sleep would help, but I can’t get that. It’s exhausting and draining.” — Jen.
It Can Be a Lonely, Isolating and Tedious Life
When you can’t work or have a social life because of your pain, life can become extremely lonely. Even a trip to the supermarket or a visit with family might be impossible.
“It’s a lonely, isolating existence. It steals your joy, destroys relationships and your independence. Even now with the monster under control, my confidence has been replaced with anxiety waiting for the next pain attack.” — Mim.
“This isn’t the most difficult part, but an occasionally overlooked one is that it can be really tedious and boring. You’re so limited in what you can do on a bad day that it gets dull, fast.” — Alice.
The Emotional Toll of Living With Facial Pain
Chronic pain conditions never come alone. Depression is often spoken about, rightly so, but the emotional toll can be overwhelming too. Fear, anxiety, frustration and sadness can all become part of life with facial pain.
“You feel like you are going insane. One day you’re fine, the next moment you could feel like an ice pick is being jammed into your ear and down to your jaw. You’re afraid to sneeze, to laugh… the nights are the worst by far… nothing to alleviate the pain, and sleep is all but impossible.” — Anna.
“It’s like I operate two personalities, and I hate it! When I’m in pain, I’m in such a bad mood. When I’m not in pain, I’m myself, happy!” — Wanjiru.
“The most difficult part of living with facial pain for me, apart from the pain, obviously, is the fear and anxiety. I get scared in case it attacks when I go out. What about driving? What happens if a lighting strike hits when I drive? I panic about things like that. I am scared to leave the house.” — Angela.
“I just feel sad all the time.” — Mary.
Losses and Loss of Self
Living with constant facial pain is life-changing. It can affect everything from relationships and employment to social life. There can be financial implications, too. But what many people miss most is the person they used to be.
“Since this started, I’ve lost so much. My relationship suffered. My job. But my biggest loss was me. I feel like I have lost myself to this monster in my face.” — Sarah.
“I don’t know who I am any more. I’ve lost who I was. I’m a different person. That’s the hardest part for me.” Kate.
Lack of Understanding
Sometimes the most difficult part of living with facial pain is a severe lack of understanding. That doesn’t just come from members of the public. It can also come from medical personnel too.
“Other people’s ignorance of this condition. You look fine to others, but you are in excruciating pain.” — Joan.
“Nobody gets it. I have become tired of explaining trigeminal neuralgia. I used to try. But people don’t even listen or don’t believe me.” — David.
The Comfort of Being Understood
Although support groups cannot take the pain away, they can offer something precious: the reassurance that you aren’t alone, that other people recognise what you’re describing, and that you don’t have to explain every detail to be believed.
We need greater awareness so that facial pain can be better understood. And until that understanding exists, finding others who truly understand can make a real difference.
“TN is a rare disease, and for that reason, others do not understand what you are experiencing. A friend of mine with TN often reminds me that only another TN sufferer understands your pain.” — Veronica.
The Most Difficult Part of Facial Pain Can Be Different For Everyone
Sharing these people’s experiences shows that the most difficult part of living with facial pain can be different for everyone. But I want to add something else here — the pain can be unpredictable, and that means that the most difficult thing can be different every day. Today, brushing my teeth might be the hardest thing I encounter. Tomorrow, it might be having to go outside on a breezy day.
No two days are the same when you live with facial pain. The pain is there. The fear of the pain is there. Sometimes the only variation is in the intensity of the pain.
I hope sharing these experiences helps other people understand a little bit more about the difficulties of living with facial pain.
Awareness is sometimes about letting people hear your voices, so I want to thank everyone who has contributed to this post.
Please click here for more information and posts about facial pain.
Facial Pain Research Petition
Research is needed so much. If you’d like to support Jimmy’s efforts to raise awareness of the need for more research, you can find and sign his petition here.
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Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
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What is find difficult is that I don’t want to be defined by it or be a victim. There is more to me than my facial plain. On the other hand, I’m in agony. I don’t know how I function some days, but I do. I want some understanding and respect for that. It’s bad, some people wouldn’t cope. When I’m tired or fatigued, it’s not like their tiredness. My pain is not like their headache. I don’t want you to feel sorry for me but don’t compare what you have to what I have. When I tell them I’m in pain, know that on that day, my pain is so bad that I wish I was unconscious. If I’m tired, know that I’m struggling to even think about the next word I need to say.