Things I wish I had known about managing pain.

TLDR: Man experiences debilitating pain for weeks, challenges his biases, and revises his perspective on life.

1. The ex-biker I put in the “damaged goods” box

My first summer job required me to deliver medical equipment to disabled people. I remember meeting him. He had been a biker, but a car crash had left him paralysed from the waist down. We had come to his house to deliver an adjustable bed for him.

I remember his frustration as he fumbled around the house with his new pair of wheels. Except these ones weren’t cooperating.

I asked him naively if he was doing okay.

“No I’m not”, he said, shaking his head angrily. “This fucking sucks!”

I stood in his kitchen, not knowing what to say, as he explained that his fiancée was leaving him because she couldn’t cope with their new reality. I could see in that instant the life he had lost forever and only glimpse at the one he’d be dealing with going forward. That day, I didn't talk much to my co-workers. The man’s anger had hit me like a truck and I didn’t know what to do about it.

I may have had empathy for his predicament, but unconsciously - if I’m honest with myself - I put in him in a box. A box with a “I don’t want to know” sticker on it, to protect myself from the unthinkable.

Over the years, I put all sorts of people in that box : the unlucky, the differently-able; dare I say it: the weak, the burden, the ones who can’t quite contribute like the rest of us, the people other people have to take care of. I packed them away in the attic of my mind so I didn’t have to think too hard about it. Fast forward twenty-five years later, I’ve learned the bad news from the neurologist. It fucking sucks.

“I will support your application for disability and invalidity”, she tells me as we talk about my future where working is unlikely. “You are still young. You need to reinvent yourself”.

And all I can think of is, I don’t want to be put in that box.

My situation is absolutely nothing in comparison to that man. What are two damaged nerves versus losing limbs? I may suffer from chronic pain, but he couldn’t walk anymore. The amount of hardship he’s had to deal with I cannot begin to imagine. The only thing we have in common is that I’ll need some kind of accommodation if I’m to work again. Big deal.

But experiencing the never-ending chainsaw buzz of angry nerves mixed with jackhammer shocks for weeks has been a break point in my life that has forced me to reckon with that biased part of myself. And I know I’m not the only one carrying a “I don’t want to know” box in my head.

Pain and suffering are part of the human condition; yet it can be weirdly ignored, dismissed, misunderstood. Especially at work.

2. Good reasons to disclose your pain at work? NONE.

Talk about life-altering pain, and many people get totally weird. They tell you about their bad knee, the time they stubbed their pinkie toe against a wall (OMG the pain, the pain!!), or about the latest diet and exercise combo you should try (Keto. is. the. best.)

It's often well-meaning, but it is also oddly dismissive.

Take my friend who has become deaf in her early 40s. The end of the nerve connected to her ear is the equivalent of a 90 year old one - all used up. There is no known cure. Yet, several people have asked her if it wasn’t blocked wax that was the cause of her loss of hearing. Has she tried cleaning her ear properly?

It’s kind of funny the first time. Much less the second and third time.

At work, things become even weirder because now there are performance expectations.

There are many kinds of pain (physical, mental, emotional, trauma-related, disease-related, etc.) Some are visible, but many are invisible. And therein lies the problem.

Studies have shown that people with invisible pain receive less sympathy compared to those with visible disabilities. In fact, according to a survey by the Boston Consulting Group, approximately 25% of employees reported having a disability or health condition that limits a major life activity, though only 4% to 7% of organizations report having employees with disabilities (BCG Global).

The fear of negative repercussion in the workplace is so strong, most people hide their pain.

So many of us carry deep-seated biases rooted in societal expectations of self-sufficiency and productivity. Why take the risk of appearing weak? Or incapable?

Take a glaring example: women have periods, get pregnant, go through menopause. Many have to deal with unpredictable and painful hormonal changes, most of which is not taken into account when discussing performance at work.

The expectation: that’s just nature, deal with it.

We live in a world where half the global population may go through painful moments by design and we don’t want to hear about it - is it any wonder disclosing pain can be a stigma landmine?

Here are some of the most common biases people face when they do disclose pain:

• Validity doubt: scepticism about the legitimacy of the pain. “It can’t be that bad!”
• Laziness perception: viewed as lazy, unmotivated, or trying to game the system to get time off. “Can you believe she’s taking time off for that?”
• Reliability Concerns: seen as unreliable or inconsistent, affecting task assignments and responsibilities. “I didn’t think you could complete the project on time.”
• Proof Pressure: Biases creating pressure to constantly prove the existence and severity of pain. “They don’t look sick to me.”

I have experienced some of these biases personally. I’ve lived with a loss of mobility in my right arm for the past 20 years. I’m right-handed. There are things I have difficulty doing, like lifting stuff. Early in my career a co-worker asked me to pull a heavy box from a shelf. I explained why I couldn’t do it. Her answer?

“C’mon, act like a man!”

She then proceeded to tell my co-workers how I hadn’t helped her. Apparently, in her mind, I could have toughed it out. It was done in a jokey way, but the message was the same: I was a wimp.

The remarks lasted for days, until another co-worker completely forgot about my condition and slapped me amicably on the shoulder as a way of saying hello. Like bros do. I turned white instantly, as my brain diverted all its energy toward managing the source of the pain. That time it was pretty clear I wasn’t faking it and I was sent home. On the up-side? I passed that ‘proof pressure’ test with flying colours.

After that experience, I learned to disclose things, in a: “Yes manager, I’m a manly man, only I have this thing, but don’t worry I work really really hard” kind of way.

3. How pain deconstructs your sense of self

Life-altering pain is one of those experiences we can't fully grasp unless we've endured it ourselves. Like having children. Overcoming addiction. Dealing with grief. Facing discrimination. Or experiencing war. It’s only when it affects us that we get it.

And our experiences of pain vary greatly in type, intensity, and recovery. This makes it extra challenging when relating to others experiencing it.

Let me combine two overused metaphors to try to express how all encompassing pain can be: it’s like an iceberg of what we see above/don’t see below, wrapped in an onion with physical, psychological, emotional, and behavioural layers.

Take my condition for example. The clinical assessment is that I have 2 damaged nerves. My shoulder looks weird due to 20 years of muscle atrophy. That’s the outer layer. You can imagine the surface level impact: mobility issues, makes it harder to drive or cook, maybe also to write or type at a computer. All true.

Peel back a layer

Go deeper and you’ll see that the damaged nerves are right next to my neck. They send their anger directly into my brain. At times of peak pain, it meant a brain fog so thick I couldn’t think straight. Not thinking straight means not being able to work. Not being able to work means less meaning and more loneliness (another stigma).

Peel back a layer

Without a working shoulder, I’ve had to stop my main hobby: mountain biking. The thing is, I used to mountain bike twice per week. I’ve been part of a club for years and know a lot of members. So most of my social connections were gone in one day. No social connections means… oh wait, did I already mention that stigma?

Peel back a layer

I couldn’t play with my daughter like I used to. No more pillow fights (her favourite thing in the world). No more trampoline (too dangerous). No more long play sessions (too tiring).

Papa’s not so fun anymore. Papa can only play Lego for 30 mins at a time.

Peel back a layer

There were days were I didn’t do much other than staying on the sofa, listening to soothing music to try and calm my shoulder. My brain was akin to a fish bowl full of piranhas. I couldn’t drive or do stuff around the house. I became entirely dependant on my wife. Our relationship changed as she took on the role of care-taker.

Peel back a layer

Constant pain means I was more impatient, irritable, less tolerant. I was not just feeling pain, I was causing it too.

Peel back a layer

Who knew I would hang out so much at the pharmacy? I need meds to live a happier life now. What happens if I run out (or get addicted)?

Peel back a layer

I’ve never felt so weak. So guilty of being a burden.

I haven’t worked for months, how will I make money?

What will happen to our business?

Who am I if I cannot contribute?

The heart of the onion

Today my biggest challenge is not managing pain or tiredness, although this will now be part of my life; it’s dealing with the loneliness and the loss of meaning that comes from losing most things I love doing.

4. The rollercoaster of recreating your sense of self

Talking about the benefits of pain is a complex and challenging topic, particularly when discussing life-altering situations. There are many situations where the impact of pain on a person, and their entourage, is so great it leaves long-lasting physical, emotional, and psychological issues. I do not want to negate the hardships of many by sharing the following.

Now that I can think straight again (thanks, meds) I’ve been wondering: what lessons can I glean from this experience? What are the positive aspects of going through pain?

So, I’ve started reaching out to folks who have dealt with life-altering events: cancer, becoming deaf, having a tumour removed, etc. While I haven’t found the neat “so what” I’ve been looking for, we do share a few things in common: a renewed appreciation for life, more empathy, and perhaps a more well-rounded perspective of what it means to be human.

To get there, I need to tell you about resilience.

4.1 Resilience and inner strength

We tend to think about resilience in binaries: those who have it and push through, and those who don’t. But dealing with life-altering pain doesn’t always work like that. It’s only when I stopped resisting and fighting pain that I started on a path toward recovery. Resilience is also about accepting when fighting is not the right answer.

In his book Fortitude: The Myth of Resilience, and the Secrets of Inner Strength, Bruce Daisley argues that viewing resilience as an individual, innate trait is both misleading and potentially harmful. He sees resilience as a collective endeavour. According to him, inner strength and resilience are fostered by the support and connections we have with others.

This very much aligns with my own experience : it’s thanks to the support of my wife, my daughter, and the friends I could call on when I hit rock bottom that I started to get better.

Yet, recovery requires a lot of mental work. It is never a straight line, and there are many steps back before it gets better, if ever.

Dealing with setbacks becomes paramount. It requires putting new strategies in place, new routines, letting go of others that are not serving us well anymore.

4.2 Reinventing yourself

It turns out: reinventing oneself ain’t easy (sorry my dear neurologist).

There are the things you need give up, the accommodations you are OK with, and the things that were never in your purview before, but now don’t seem that bad.

For instance, I can now drive again, thanks to a steering ball affixed to the wheel of the car, and a small cushion attached to the seatbelt (so it doesn’t touch my shoulder). I can even write on a computer again! I mean half of this article has been written using hard-to-use voice-to-type and voice-to-text technology, but that’s a start, right?!

Remember when I mentioned I lost most of my social connections when I stopped mountain biking? You may have thought: well, change hobby you dum-dum!

I’m trying. After reviewing what I could do physically and without getting exhausted too fast, I decided to join a board game café. You know what? Mountain bikers and board game geeks don’t really overlap in terms of fun (I know, hard to believe). I’m still looking for a new hobby. Walking? Hiking? Swimming one arm breaststroke style? Oh so exciting.

Despite all signs pointing to it being a bad idea: I’ve recently started cycling again, albeit on the road - thanks to a bike fitted with as many vibration-dampening-tricks I could throw at it (think padded gloves, big tires, handlebar made of bamboo, and suspensions). It kind of works, but not completely. I know I should give up cycling altogether, as the uneven chipseal of the Irish roads hurt my shoulder. But I’m not quite ready to give up the beautiful sense of adventure that comes with it.

I remember the shifts in perceptive I kept experiencing while I was volunteering to give soup, tea and sandwiches to homeless folks on the streets of Dublin. That experience in my twenties reconfigured any clichés I had about their situations forever. From the kid who had been thrown out by his parents because he was gay, to the woman who had been sexually abused, to the foreigner who had crossed the ocean to arrive in a country with nothing. I kept telling myself that I wouldn’t have been able to survive half of what they were going through.

Perhaps, reminding ourselves to listen instead of assuming is the best antidote against our biases?