The invisible pain dilemma

Those of us that experience chronic pain undoubtedly have one or more stories of being dismissed because we don’t ‘look’ sick or injured. For medical practitioners the issue seems to be that we don’t present with the typical signs and symptoms of textbook medical issues that can be easily diagnosed. Blood tests come back negative, the body moves in the way it’s supposed to, imaging results show no abnormalities, no signs of cognitive impairment (ie aware and responsive).

For family, friends, and colleagues the issue seems to be that we don’t appear in the way that the majority of us associate with being in pain, which is to say no obvious bruising, limping, broken limbs, casts, slings, bandages, or other visible signs of injury or illness. What’s more, many chronic pain sufferers have no clear mechanism of injury, or in other words, nothing ‘happened’ to cause the pain.

In my case, the only pain that makes ‘sense’ to those around me is my right ankle pain. It helps that I have two long scars along my ankle bone where they put in and took back out a plate and screws so many years ago. I often get flare-ups of pain that make it near impossible to put any weight on it. For that reason, I’ve often had a cane handy to help me walk during a flare-up. Unfortunately, they are mostly unpredictable flares and oftentimes I’m caught off guard, risking many a disastrous fall or spilled drink.

When the pain becomes visible

More recently, as I’ve started to treat myself with more compassion, I’ve started using the cane proactively as a way of giving myself more confidence in my movements so that if a flare happens mid-stride, I’m ready and able to transfer my weight to the cane.

Regardless of the reason, proactive or reactive, an interesting thing happens when I pull out my cane. Suddenly, my pain seems more ‘real’ to those around me. It has become visible. During a visit home to Ontario, I brought my cane with me for the first time. With each family member that I encountered, I was asked the same question: “What happened!?” “Nothing,” I’d answer, knowing they were expecting an epic tale of injury. 

“I’m just anticipating pain and the cane helps me get around.”

“Is that still from your car accident?” They’d ask, with a look of disbelief on their faces.

I almost feel like I’m letting them down when I answer with a yes. I feel like I’m cheating them out of a good story or something. 

Just the same old, same old. BO-ring.

How can I make you believe?

Once the pain becomes visible, however, it seems to become more believable. The frustrating part is that whether or not I’m using the cane, the pain is always present. What’s more, the ankle pain is just one of the pains that I feel on a daily basis, but the others have no visible signs whatsoever. I can’t point to them and say, it’s right here and it hurts when I do this, see?

I’ve battled with this realisation a lot over the years, struggling with how I appear to others when I’m in pain. I liken it to calling in sick for work when you have something like a bad head or stomach ache, but otherwise you don’t ‘sound’ sick over the phone. So to make sure your boss really knows that you’re sick, maybe you play it up a little bit. You drop your voice, slow down your speech, sniffle a little while you speak, maybe clear your throat and moan a little.

“Hey boss…*sniff*… I’m not feeling too well this morning. I think I…*clears throat*…sorry about that, ugh. I think I caught something. I won’t be in today….*sniff*…”

Nailed it.

I began my stint on disability on a Short-Term Illness and Injury Plan, or STIIP. When that began it was the longest period of time I had ever taken off work to address my chronic pain. This time of disability has been an absolute blessing to be able to take the time I need to not only investigate my physical pain with my doctors, but also give some much-needed attention to my deteriorating mental health. Regardless of the very clear and logical reasons for being on STIIP, there was this constant feeling like someone is always watching me, especially when I was out in public, to assess whether I was physically ill or injured enough to be on the plan.

Ha! I saw you run while you were playing with your dog. In too much pain to work, eh? Suuure. Let’s see what the authorities have to say about this!

You look to good

I had several in person meetings with my supervisor while on STIIP to provide updates and see if I was ready to go back to work. There was a mixture of feelings that came up when preparing for and attending those meetings. On one hand, there was the excitement of getting out of the house for the first time in weeks for something other than a doctor’s visit, especially during the COVID pandemic. Any excuse to shower, dress, and leave the house was a day to celebrate.

Hello pants, I’ve missed you. Sorry bra, still not ready for you yet. Underwear? Yea, OK. But only the loose soggy ones, no need to get too fancy here.

On the other hand, there was the fear that they’d take one look at me in my pants and freshly washed hair and think, there’s no way this person is ill. They’re obviously faking it. She even washed her hair and has a smile on her face. I’m calling the authorities.

I couldn’t help but feel judged every time I wanted to do anything that was not reclining on the couch or resting in some other way. Like I wasn’t supposed to be enjoying life while getting financial support. 

On one such visit to see my supervisor at a local coffee shop, I became acutely aware of my physical appearance as I was telling them that I still didn’t feel ready to come back. I immediately realized that I had clean, coiffed hair (which meant washed then dried with a hair dryer and not air dried – classy), I was dressed in well fitting clothes that flattered my physique, even showing some arm, and I had even decided to apply lipstick and blush, my favourite (and only) style of makeup. My supervisor looked empathetic to my situation, but started nonetheless to recommend alternatives to my normal duties, trying to accommodate me as best he could to get me back.

“You could come in just to do simple technical stuff in the background. Even two days a week. Even a couple hours a week, it really doesn’t matter.”

Oh shit, I look too good. He’s trying to get me back by easing me in. Why did I smile so much? I should look more miserable. Maybe if I slouch more? Why am I sitting so upright!?

“Sure, that sounds OK.” 

Bring on the guilt

That’s when the guilt set in. Guilt because I felt like I “should” be working if I felt good enough to get up and get ready to go out to a coffee shop. Guilt for not being honest with myself and firm in my knowledge that I was not ready to return to work. Guilt that I let my confidence crumble and changed my appearance to suit (my perception of) someone else’s impression of me.

There are many stories like this one that have occurred over the last three years. Stories of guilt and shame over how I look and behave while being on disability. I am happy to report that those feelings have mostly faded away, to be replaced by self-compassion and understanding. I know that I don’t present in the way most people expect someone on disability to appear. The big change for me is that I don’t doubt myself any longer. I know what I am experiencing, and I know that I deserve to ask for and receive help.

This seems like such a simple thing to state, but it has taken three long years of working through painful memories and difficult feelings to be able to make such a statement and believe it to be true with every fiber of my being.