Invisible suffering

Why is pain such a hard topic to talk about?

Timothy Soh doesn’t remember when the pain began, or what happened to him.

Like most of the men interviewed for this story, his pain developed during National Service. The 34-year-old operations manager at a printing company had run 20km a day, every day, for months.

And then one day, he was paralysed from the waist down.

He had been running, and was leaning to one side and another to ease the pain from a set of slipped discs. Then, he remembers lightning streaking down to the back of his right leg.

His gait became wobbly, and then he fell on the running track at Pulau Tekong. He could not move. It hurt, intensely at first — but the pain wore off soon after, replaced by a numbness.

“I touched my legs and I could see myself touching my legs, but there was no sensation of my legs,” he says. “That was creepy.”

It took a couple of hours of resting in the sick bay for any feeling to return.

Soh — who also suffers from patellar dislocation in both knees — says that the pain has limited him from doing a lot of things, like canoeing, mountain treks and rock climbing.

“Even trying to lose weight can be a problem because a lot of these exercises I cannot do — crunches, sit-ups and all that,” he says. When his knee pain sets in, “it’s like taking a long thin knife, and then trying to jam it between your knee joints under the kneecap.”

And that exerts a toll. “It occupies your entire — up to at least 95 percent — of your consciousness,” he adds. “The other five percent is to breathe and not fall over.”

“You feel miserable,” Soh adds. “All you can think of is not wanting to exist with the pain.”

Soh says that he tries to avoid informing his family and friends in detail his chronic pain. “I save the trouble by telling them that I dislocated both my knees,” he says.

Headstrong, he says that he doesn’t like to have to depend on people.

This silence isn’t uncommon amongst pain sufferers, who often want to be self-reliant, or are ashamed to discuss their pain.

Dr Yang Su-yin, a pain psychologist at TTSH, says that she often sees sufferers — especially those who have jobs — say that they don’t want to be seen as lesser than their peers.

“I had one patient who functioned very well in the community, who refused to come to us even though she was obviously avoiding some issues,” Dr Yang says. “She told me that each time she came to me, I reminded her that she has pain. And she didn’t want to feel like that.”

Ann Chiam, a 57-year-old bridal designer who suffers from pain and irritation from a herpes infection from when she was 32, says that she doesn’t really talk to others about it — except for her doctor. “It’s not their problem, it’s a personal problem.”

She stresses that she can take care of herself, after 25 years of near constant irritation.

If she tells other people, Chiam says, they wouldn’t understand how she feels. “I can’t really tell you that I’m in pain. It’s difficult.”

Chiam — who in recent years has begun to suffer arthritic pain in her shoulder — sees her younger sister, Colleen, nearly every day.

Colleen — who does administrative work for her company — works out of Chiam’s home. “We’ve lived together, we’ve worked together. We eat together. So we’ve been together for some time,” Ann says.

But to Ann, really communicating with Colleen is difficult. Colleen has helped by giving advice, Ann says. “She’d recommend doctors, that’s basically it. The first thing she’d think about is how to resolve my problem.”

For many patients, the first thing sufferers need is a listening ear, not someone who tries to find a solution, says Dr Yang.

Her patients tell her that they often wish that their spouse would just listen and not try to fix a problem, because they’d end up feeling worse instead.

“They just want someone to sit there, and just not having to say anything, maybe just holding their hand, a gesture, more behavioural I would say, rather than just saying or verbalising certain things,” Dr Yang adds.

The urge to compare and to recommend treatment methods from what others have gone through might be with good intentions, but it might also hurt.

“They may come from a good heart in that sense, but at the same time their loved ones will perceive it quite differently because now they are in that heightened emotional state and just very vigilant,’ she says.

Strength in support

Joan Young, a 50-year-old homemaker, sought solace with her family when medication failed.

Young, who tried nearly five different painkillers for her fibromyalgia, decided to make the switch to traditional Chinese medicine — herbs, acupuncture and acupoint massages — in 2015.

The cold turkey period — where she suffered withdrawal — felt extremely unbearable, she says.

“There were like a few times I didn’t want to live — I wanted to like, just die,” she adds.

To help her, Christophe*, her husband, read up to on her condition.

“It’s very important not to be alone. I think if you are alone and in pain, if you aren’t able to communicate to your partner — it is oppressive,” the 54-year-old banking analyst says.

“It is like being alone in the dark.”

The pain would be more bearable if there are others around, Christophe adds.

“If you have good communication with people — other people are suffering with you. Not physically, but emotionally they are present and they are really dedicated to make you feel better.”

“Families could be in a better position to understand what their loved one is going through because they see them on a day-to-day basis,” says NTU’s Prof Ho, a community health psychologist.

“And so they actually see the suffering there, it’s easier for them to comprehend the disability that pain can cost.”

Evon Toh, who was bedridden for weeks at a time because of her chronic back pain, also had support from her husband, Andrew Ho.

Ho, a 39-year-old customer support engineer, would help her with her life when she was incapacitated; he would apply muscle rub on her back; and pack the essentials she needed — a back brace and painkillers — when they vacationed together.

“He gave me a lot of time and space to recover,” she says.

Toh has always been open about her pain, because she doesn’t want anyone else to ignore their back pain, which, she says, might end up being “accumulative”.

“I am open to share because I want to let other people know that they need to do something about your aches and pains before it escalates,” she says.

Pain had been a lonely experience for her — in the period during her pain flares, even the strongest painkillers she was prescribed could not help.

She had to go to her family doctor to get some shots.

“I won’t say that it’s because they do not understand, but when medicine doesn’t work, they are really totally helpless to you,” she says. “Emotionally, it’s very difficult to gain support from other people.”

Hearing from others helped, she adds. “It helps to know that you’re not alone — that conditions can be overcome and things can get better.”

Misunderstandings pave the road to silence

Patients often feel misunderstood because chronic pain is often invisible.

“A lot of times, people either think they are malingering or they are just using pain as an excuse not to do things, or that they’re attention-seeking,” Dr Yang says.

“Sometimes patients also say their family and friends who are supposed to support them say things like ‘you should just get over it’, ‘you look well’, and so that can also make them quite upset.”

Ivy Li says that her mother’s first response to her when she says she hurts, is to ask her to “go exercise”.

She’d be told that she is “too fat”, Li adds.

“(The pain) has always been brushed aside,” Li, who also suffers from chronic depression and borderline personality disorder, says.

Though Li lives with her brother, their relationship is virtually “non-existent”.

“He thinks that the depression is something I can break out of,” she adds. “I don’t know if he can understand my pain.” She “gave up” on making him see her viewpoint.

A lot of people question the pain of others, Ann Chiam says. “They’d go, ‘Really? Does it really hurt?’” she adds. “A lot of people who are in pain — they’re just bearing it.”

“You need to be more thoughtful for them — to think about what they’re going through.”

Dr Yang says that these misunderstandings make sufferers feel as though “no one will be able to fully understand.”

Sufferers often question the point of talking about it, because after a while, friends might end up being more condescending. “So it doesn’t help them, and that actually can contribute to a lower mood state,” Dr Yang adds. “Patients then stop discussing it.”

Toh says that it’s important for others to acknowledge that pain sufferers do hurt, even if they look normal.

Though she hasn’t felt misunderstood because of her pain, she’s had friends who have felt judged because of their own pain. 

“When you are in pain and you personally don’t show it, you are bound to get some questioning looks from other people,” she adds. “People just can’t understand.”

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