How do we get better if we have to constantly prove we’re in pain? And does that constant need to prove we’re in pain prevent us from getting better?
In recent posts I wrote about the shame I felt after developing chronic pain and how I’ve been working through that shame. They were the hardest posts I’ve ever written, my most vulnerable by far. And they have also been the most resonant with all of you. That tells me something.
Now I want to talk about something that I think is closely related to shame: the desire and need to get better and pursue a meaningful life, coupled with the need to constantly prove we are in pain in order to receive care and compassion.
It is hard to constantly have to explain one’s pain, thereby having to explain one’s self. Which often leads to having to defend one’s pain, thereby having to defend one’s self. Our very integrity comes into question, and that is wrong.
Desperately trying to get better
It’s difficult to get better and move on when you have to constantly prove that you’re in pain in order to receive care or understanding.
It’s difficult to get better and move on when just trying to live a meaningful life in the presence of pain can be used against you to downplay or dismiss your condition, or deny you treatment.
It’s difficult to get better and move on when the focus is on your secondary gains and not your primary losses.
It is a distressing theme I have come across in my interactions with people living with pain, particularly those in the work comp system.
As I mentioned in my shame post, one of the interactions that contributed to my own downward spiral was being accused of malingering by someone I had trusted and who I had considered a friend.
One of the ‘proofs’ laid against me was Facebook. Another was a work party I attended for less than an hour.
It’s a problem too many people in pain face. Any effort to have some semblance of a life, to find some joy, some relief from the pain, worry and stress, to find some light and laughter, is too often used by others as proof that we’re fine. That we’re faking it. That we’re not really in pain.
After all, if we smile, if we leave our house, we must be better, right? We must have been fixed. We certainly no longer need care. Or, even worse, our trying to have a life with this pain card we’ve been dealt is used as an indictment that our pain was made up or exaggerated to begin with.
That is soul crushing. It extinguishes any light we may have found amidst the darkness.
A tale of two stories
I did go to a party while I was off on work comp. I hadn’t been out of the house in months, so a friend encouraged me to go. I really wanted to see the people I used to work with, people I’d been so distant from for over a year.
I wanted to feel connected to my old life again. I wanted to feel connected to life again.
I figured the flare-up that I knew would ensue would be worth it. So…
- My husband drove me to the train station because I still couldn’t drive, it was too painful.
- I stood the entire 45 minute train ride because sitting was too painful.
- My friend picked me up from the train station where I laid horizontally in the front seat of her car on the way to the party because sitting was too painful.
- At the party she blocked people from coming anywhere near my post-surgical hip. I was guarded, wary and tired, but smiled and laughed and tried my damnedest to ignore the pain. I put on a happy face, a hopeful air.
- We only stayed a short while because my pain became intolerable.
- A drive back to the train station, lying horizontal. Standing on the train on the way home. Husband picking me up from the train station.
As I got in my husband’s truck I was a mess. I was in a place beyond pain. And I was so so sad that I couldn’t go out for just one night, just one hour, like a normal person. That this was my life.
Only my husband saw my agony, my tears, my frustration, my hopelessness, my fear. Only he saw my pain, which was unbearable in the days to follow. Days I don’t remember for the pain. Only he saw my darkness.
Others saw me at a party and thought I must be fine.
Trying to live, and sharing that life, can backfire for folks with pain
The party wasn’t the whole of it.
People also saw my posts on Facebook about me loving sunshine, walking with my dog and husband, reading in the backyard. Posts about my workouts at the gym as I tried to get better, tried to get back to work, tried to get back to myself. Workouts that were given me as homework by my physical therapists.
I shared my moments of light amidst a sea of darkness. I didn’t share the darkness.
Who’d want to hear that my pain was through the roof and I couldn’t think about anything else? Who would want to know that some days I couldn’t function at all? Or that I incessantly worried about my uncertain future, our uncertain future. That I worried we might lose our house, or our marriage? Who would want to know that I couldn’t make the simplest of decisions, the smallest of decisions that seemed so monumental? Or that I worried about my cognitive capacity and often felt I was losing my grip on reality?
Who’d want to know my fears, my anxiety, my pain?
Hell, I didn’t even want to know them.
So I hid them. I hid my shame, my fear, my anxiety, my worry, my pain, because I didn’t want to burden anyone. I didn’t want to appear weak, defeated, broken. Less. Unworthy. A failure.
I wanted to appear strong. A warrior. A fighter. A firefighter. That’s who I had been, after all. A hero.
So I shared a few moments of light. Moments I desperately wanted to magnify, to make last, to give me hope.
And it backfired.
Those shared moments caused me more pain when used against me by those blind to the depths of the darkness those small slivers of light pierced.
I started second guessing not only everything I shared, but everything I did.
Work comp nightmares
It wasn’t just those misunderstanding, those accusations that hurt. When I first started climbing out of the darkness, when I first started trying to engage with the world again, the restrictions on my work comp paperwork came to haunt me, too.
No squatting, no sitting for long periods of time, no climbing, no awkward positions, no lifting more than 20 pounds, no running.
NO NO NO
How could I possibly get better if I couldn’t do those things?
Yet, if I were to try to do those things, I’d worry that I was being tailed by an investigator who could document it and use it against me. Use it to prove I was trying to cheat the system. To call me a liar. To doubt and dismiss me further. To deny me care.
When I went for walks I worried that maybe I was walking too fast or in too difficult a terrain. I didn’t dare try to jog or run again. (I’ve written a post about when I finally broke free of all these work comp fears and frustrations and attempted running again.)
I didn’t lift more than 20 pounds at the gym, just in case I was being watched. I tried not to squat, climb or get in awkward positions in public, because I desperately needed treatment, needed help.
My pain was unbearable and I wasn’t willing to jeopardize my case, my care, by doing anything stupid. How is it stupid to engage with life, to move, to try to get better? How is it stupid to do normal, everyday things that we all do?
How is it stupid to do things that would have helped me get better? Why are our systems set up this way? Why do we make it so difficult for people to heal? To get better? To get back to work and life and living?
It became pathological
Those NOs were insidious. They became a part of my belief system about myself, about what I could do and could not do. What I should and should not do. Those NOs fed my fears and worries and anxiety. They changed my thoughts, my confidence, my movement, my behaviors.
This, when all I was trying to do was live, survive, get through one day and into the next. When all I was trying to do was get better.
How do we get better when there is a battle being waged between trying to improve and proving we still need care and time?
The sad irony was that all I wanted was to get back to work, not avoid it. All I wanted in life was to get back to firefighting. Back to my career, my future, my retirement in another 25 years, my financial security. Back to my identity, my sense of worth, my purpose…my life.
Secondary gains…or primary losses?
People said I was lucky that I could medically retire. The term ‘secondary gains’ was thrown about by various practitioners and medico-legal professionals, many of whom had never met me, who didn’t know the first thing about me.
But what about my primary losses? It had never even occurred to me to ask. I only ask now because of a conversation I had at the 2017 San Diego Pain Summit with Jason Silvernail (an astute and compassionate physical therapist in the US Army who my admiration for only grows with each meeting).
Those of us living with pain have lost so much. Careers, career prospects, income, financial security, relationships, identities, worth, purpose, meaning, hobbies, physical fitness, mental health, social outings, travel, sport, function…our humanity. There’s so. much. loss.
No matter what ‘secondary gains’ there may be, none of us would ever choose them over what we once had, and could have had.
The primary losses are so much greater than the secondary gains, so why do we never talk about that?
How do we fix this?
I’m not the only one. I know because someone reached out to me with an eerily similar story. They shared fears of going out for walks for fear it would be used against them in their work comp case, fears of leaving the house because of what conclusions might be drawn if they were seen, fears of playing with their children at the park because they did not want to jeopardize their claim.
That is heartbreaking. Atop their debilitating pain, they are afraid to live their life, afraid to spend time outdoors with their children, afraid to do things they know would help them get better.
And it’s not just work comp, employers and insurers. It can be friends, coworkers, family and acquaintances.
When your living with this pain you may not be able to make sense of and not know what to do about, all this doubt and denial just adds another layer of distress and confusion and difficulty. It’s beyond disheartening. We have to constantly defend and explain ourselves, to everyone, which is exhausting and demoralizing.
In an article by Jodi Ettenberg in the Guardian last year she wrote ‘my distress was compounded by the fact that I looked healthy, even though I was in pain all of the time. “You seem great!” friends would say, glimpsing a photo on Facebook.’
I can relate to that. As so many of us can.
Live and let live
Why shouldn’t people with pain or chronic illness have a life? What is the alternative? To retreat to the darkness forever? To succumb to the abyss? To never leave the house? Never leave bed? To give up? To just die already?
Aren’t people with pain or chronic illness allowed to have a life? Isn’t that ridiculous to have to ask?
What if people with pain were encouraged and supported by their healthcare providers and insurers to pursue their lives, while also still being eligible for care? How much more effective could care be under such an approach?
It wasn’t until I started reengaging with the world again that I started to get better, after all. It wasn’t until I realized that those NOs on my work comp paperwork weren’t true representations of what I was capable of. That they weren’t a life sentence.
Sadly, this only happened once I left the work comp system and decided to take my care into my own hands. It shouldn’t have to be that way. My surgeon was the one who recommended I get out of the system. He was the kindest, most caring healthcare professional I saw during my time in active care. And work comp denied most of what he recommended after surgery didn’t work for my pain.
It shouldn’t be that way. And surgeons shouldn’t have to recommend to their patients that they get out of the system to get better.
He was right, though. It wasn’t until I reconnected with nature, started hiking again and got back on my snowboard that my life changed, that i started to get better, that things started to change, even if my pain didn’t.
And eventually, my pain changed, too. But only once I got back to living, without fear of repercussions of ‘getting caught’ trying to live a meaningful life.
My life wasn’t on hold anymore. And that changed everything.
Snowboarding helps me to feel alive
We need change
The way we view chronic illness and pain needs change. Worker’s compensation needs change. Healthcare needs change. Society needs change. We need change.
It breaks my heart to see people trying to get better while also having to fight the system and fight stigma and fight for care. And it is a fight, don’t get me wrong. And it needn’t be. Shouldn’t be.
To be clear, there are good people in the system. But the system is broken.
Be the change
There’s a lot of change that needs to happen. It will take a long time. But in the interim, as we’re turning the ship, we can each do our part.
If you see someone who has chronic pain or a chronic condition out having a good time, or you see a post of a moment of light, I beg of you not to make a judgment about their pain or their health or their lives. For that matter, let’s all try not to make a judgment about anyone’s pain or health or lives, whether we (think we) know them to be healthy or not.
If someone is sharing a moment of light, let us be supportive and encouraging, or be silent if we have no support or encouragement to give.
If someone is sharing a moment of darkness, let us be supportive and encouraging, or be silent if we have no support or encouragement to give.
None of us has this figured out. None of us are better than anyone else. And none of us knows what another is going through, what struggles they face, what pain they are living with.
I am going to vow to support others, both personally and professionally, with love and kindness. With compassion and encouragement. With understanding and a willingness to listen.
Will you join me?
For further reading, check out “If you have to prove you are ill, you can’t get well’ by Norton M. Hadler in the journal SPINE in 1996. 1996!