Trying to get better while having to prove we're in pain: struggles in healthcare

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. But they have also been the most resonant.

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.

It is hard to constantly have to explain one's pain, to defend it, thereby having to explain one's self, to defend oneself.

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 deny treatment or downplay or outright dismiss your condition.

It's difficult to get better and move on when the focus is on your secondary gains and not your primary losses.

It's a distressing theme I have come across in my interactions with people living with pain, particularly those in the work comp system.

I mentioned in the shame post one of the interactions that contributed to my own downward spiral: being accused of malingering.

One of the 'proofs' laid against me was Facebook. Another was a work party I attended for an hour.

It's 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 better, that we've been fixed. That we no longer need care or, worse yet, used as an indictment that our pain was made up or exaggerated to begin with.

A tale of two stories

I did go to a party while I was off on 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.

I figured the flare-up that I knew would ensue would be worth it.

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 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.

Only he saw my agony, my tears, my frustration. Only he saw my pain, unbearable in the days to follow. Only he saw the darkness.

Trying to live, and sharing that life, can backfire for folks with pain

That 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 given me by my PTs, by the way).

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 and couldn't function? Or that I incessantly worried about my uncertain future, our uncertain future, that I worried we might lose the house or our marriage? Or that I couldn't make the simplest of decisions, they seemed so monumental, and 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.

So I shared my few moments of light. Moments I desperately wanted to magnify, to make last, to give me hope.

But it backfired.

Those moments would cause 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 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 would 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.

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 2o 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 needed treatment, I needed help. My pain was unbearable and I wasn't willing to jeopardize my case, my care, by doing those things. Just normal, everyday things.

Things that would have helped me get better.

It became pathological

Those NOs were insidious. They became a part of my psyche, my movement, my beliefs, my fears.

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.

But 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 salary, my future, my retirement in another 25 years. 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, many of whom had never met me, who didn't know my story.

But what about my primary losses? It had never even occurred to me to ask. I only ask it now because of a conversation I had at the 2017 San Diego Pain Summit with Jason Silvernail (an astute and compassionate physical therapist who my admiration for only grows with each meeting).

People living with pain have lost so much. Careers, career prospects, income, financial security, relationships, identities, worth, purpose, hobbies, physical fitness, mental health, social outings, travel, sport, function...there's so much loss.

No matter what their 'secondary gains' may be, they'd never choose them over what they once had.

The primary losses are so much greater than the secondary gains for most of us, so why do we never talk about that?

How do we fix this?

I'm not the only one. It came to mind recently after someone reached out to me with a 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.

This despite debilitating pain.

And it's not just work comp, employers and insurers. It can be friends, coworkers, family and acquaintances.

It's distressing and confusing and disheartening and difficult. One has to constantly defend and explain oneself, 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 never leave the house? Never leave bed? Give up? Die?

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 for pursuing 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 a life sentence.

It wasn't until I reconnected with nature, started hiking again and got back on my snowboard that my life changed, even if my pain didn't.

And eventually my pain changed, too.

I was finally living life again, it wasn't on hold anymore. I didn't fear the repercussions if I 'got caught' trying to live a meaningful life.

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 it is a fight, don't get me wrong. But it needn't be.

To be clear, there are good people in the system. The system is broken, though.

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 or professionally, with love and kindness. With compassion and encouragement. With understanding and a willingness to listen.

Will you join me?

This essay first appeared on my blog, MyCuppaJo.com

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!