'You can't do this journey alone': Support group helps with intense pain of rare nerve condition

Pain.

It's something many of us have experienced in our lives, but very few know it the way the five people sitting around Patty Penner's table do. 

Not only do they live with incredible pain because of trigeminal neuralgia, but they've gotten really good at describing how it feels.

"Just imagine somebody stuck electrodes in your mouth," says Karen Huisman, "and then what they did was they attached the other ends to a car battery and they turned it on and off, on and off, repeatedly. That's what it feels like."

"I always tell people to imagine the worst toothache," says Tom Born, seated across the table from Huisman. "And then start multiplying, and keep multiplying. Because you don't know when it will end. I've sat there with the pain, my mouth wide open and drooling. I can't swallow, I can't even breathe."

Candace Siggs nods along in agreement. "I'd rather be in childbirth for 10 consecutive months and give birth 10 consecutive times than have to deal with this pain, because it is so much worse."

This is what it's like to live with trigeminal neuralgia, or TN — a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. Even a slight breeze or the change in air pressure can bring about severe pain.

The condition is very rare — less than 0.2 per cent of the population suffers from it — but it's one of the most painful afflictions a person can be diagnosed with.

The pain is so intense it's been dubbed "the suicide disease," and the five people sitting around Penner's kitchen table in the southeastern Manitoba city of Steinbach know it far too well. 

Each person here has lived with this crippling disease for years, but only recently have they found each other. 

And they are beyond glad they did. 

Finding support

"Before I found this group, I didn't really have any support," says Tom Born, who has been living with TN pain for the last six years.

"My family kind of understood, but they couldn't really. They would see me in pain and they would say to take some painkillers, but painkillers don't touch it. I could take fentanyl and that wouldn't even touch the pain. Walking in here, I finally found people who understood."

Penner had long hoped to start a support group for people suffering from this rare disease. She knows first hand how scary it can be when you first start developing symptoms. 

Her introduction to TN pain came in 2012 when she was working as an educational assistant at Steinbach Regional Secondary School. A "lightning bolt" of pain shot through her face that was so severe it made her gasp out loud. 

"I got up, ran to the bathroom expecting to get there and see huge quantities of blood, and there was nothing there but a little twitch on my chin," she said.

She Googled her symptoms and TN came up — a diagnosis she dismissed at first, thinking TN sounded too serious. 

She's had to quit her job and can no longer drive. She can't go to the grocery store on her own, and some days she can't even cross the street to walk her dog. But she's found joy in knowing that she is no longer alone. 

It's a joy that everyone else around the table feels as well. 

"Most of the people in this group have seen me at my worst," said Siggs, who found Patty's name online while desperately searching for anyone who could relate to her pain.

"I went to a meeting once where the pain was so bad I could not speak. I spent the entire time writing on Post-It notes. I had watered down soup that I tried to drink carefully out of one side of my mouth because I couldn't even suck on a straw.… But everyone here knew exactly what I was going through."

Hiding the pain

This is all any of them have ever wanted: to feel comfortable enough to not have to hide their pain.

"I'll be grocery shopping and I've got some milk in my hand," said Huisman, "when suddenly I get a couple of huge jabs of pain and I'm literally hanging onto a shelf pretending to read the label on something because I can't move or speak. It's embarrassing, but here, there's nothing to be embarrassed by." 

A few minutes later, Huisman is hunched over at the table, clutching her face. 

No one bats an eye. No one questions what is going on. 

You can't explain how difficult it is to live with this.- Angel Calnek, living with TN since 2009

But Angel Calnek, who is sitting beside Huisman, quietly reaches over and holds her hand. 

"You can't explain how difficult it is to live with this," says Calnek, her eyes filling with tears.

"But it's taught me how much I love my kids. Because, like everybody else, I've had those thoughts of 'if this came on permanently with no relief, I couldn't handle it.' You can't," she said.

"But thinking about my children losing me, I couldn't do that. I'd have to suffer through it."

Everyone around the table nods in agreement. They know the pain can be unbearable but at least now, thanks to this small supportive group, they don't have to suffer through it alone. 

"This may sound weird," say Huisman, as her face lights up once again in a big smile, "but this group is fun. I look forward to being here and smiling one minute and crying another. It's fun."

"You can't do this journey alone," adds Penner. "You need a team. Come join us."