Thursday June 15, 2017

How this men-only support group helps sufferers struggling with chronic pain and stigma

(L-R): Richard Hovey, Shane Conway, James Tellier, Eugene Feig, four men who are part of a men-only support group pilot project.

(L-R): Richard Hovey, Shane Conway, James Tellier, Eugene Feig, four men who are part of a men-only support group pilot project. (Susan McKenzie)

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It's estimated one in five Canadians live with chronic pain.

The physical and psychological effects can be debilitating and isolating.

New research in the U.S. has found a dramatic increase in suicides among men over 50. The factors are complex, but chronic pain is considered to be one of the main ones.

A pilot project in Montreal, funded through Movember — an annual campaign during the month of November focused on men's health issues — is exploring the benefits of a men-only chronic pain support group. The hope is these men will bond over shared experiences and find support and relief during their dark times.

Richard Hovey's chronic pain began with a cycling accident three years ago. He went from being active and outgoing to someone who could barely get out of bed.

"I spent so much time in health care and I still had expectations that I could come back and do what I was doing before," he says.

"But virtually my life became pencilled in."

'The pain itself is not necessarily the worst part ... it's the suffering of loss, of identity, work, socializing.' - Richard Hovey

Hovey, a chronic pain researcher at McGill University's faculty of dentistry, belongs to the Chronic Pain Support Group of Montreal, which is running the pilot project.

He studied chronic pain, but he didn't really understand it until his cycling accident changed everything. The group helped him work through what was happening.

"What I learned through my pain experience and being around these gentlemen is that your perception of yourself changes quite dramatically and that's the hardest part," he explains.

"The pain itself is not necessarily the worst part. It's what it does to your life ... It's the suffering of loss, of identity, work, friendships, socializing."

Among those he's learning from is Eugene Feig, who leads the group. Feig has been living with chronic pain for more than 20 years. It's caused by cervical myelopathy — a disorder that results from severe compression of the spinal cord — which was triggered when Feig slipped on the ice while holding his infant daughter.

Symptoms of chronic pain

"I've had itchy, burning pins and needles, spasms radiating from my arms, legs, my neck and shoulder blades," says Feig.

"My pain never goes below a six out of 10 for the last 21 years."

Shane Conway's chronic pain is caused by the compression of his L4 and L5 vertebrae.

"When I have a sore back, I'm totally limited," he says.

"I can't do anything. I can't lift anything."

He also has unexpected shoots of pain that he calls "the zaps." 

Pain

Chronic pain researcher and sufferer Richard Hovey says there is stigma around people who have chronic pain. (Getty Images/iStockphoto)

"They can come at any time and they're quite perturbing and they can be shocking to those around me because I end up screaming and yelling sometimes."

He adds that it's not just the pain that affects him, but also the depression that comes with it. When he thinks about the future and his pain gets in the way of his expectations, it's "a bit shattering."

"Everything sort of falls apart and you can see in the broken image of the ... shattered mirror — all these different fragments no longer making one piece of a picture," he explains.

"My life became very fragmented and it was a moment to moment because I didn't know how I would make it through that day or make it through what's going to happen tomorrow."

'There is a fair amount of stigma that goes along with having chronic pain ...' - Richard Hovey

James Tellier says living with chronic pain is still a struggle after seven years.

"I'm definitely still feeling the pain and not quite past it, so I suffer psychologically and emotionally quite a bit as a result," he says.

"I try to stay upbeat. That effort is significant because it can get pretty dark."

That dark place is often where the group comes in because according to Feig, men are not "forthcoming in sharing feelings."

"They're supposed to be a strong part of society and when a man loses his ability to create, he loses his identity," he explains.

Stigma outside the group

Hovey says the judgment that comes from those outside the group can be tough.

"There is a fair amount of stigma that goes along with having chronic pain, especially with the opiate debates that are going on," he says.

"The generalization that everyone is claiming they are in pain just to get drugs is unfair and incorrect, and I think we have to be very careful because pain for most of us is invisible," says Hovey.

Hovey says not every chronic pain sufferer displays the same symptoms. People who ask if a sufferer is "over that yet" or claiming it's all "in their head" is upsetting, he says.

"It also doesn't help us to go on with our lives and not just to manage our pain, but to learn to live well with it," says Hovey.

"That's what the group does. It helps us with that."

The pilot project is on hold for now, but the group aims to reconvene in the autumn. In the meantime, they continue to meet in mixed-gender groups.

"Usually I think people will find that at the support group — even if they don't talk — they can listen to people who have similar experiences, who have similar problems, challenges, frustrations, dilemmas, solutions," Tellier says.

"And it's very hard to find that elsewhere."

Listen to this segment at the top of the web post.

This segment was produced by Montreal network producer Susan McKenzie.