My last post, on shame, resentment, hurt and pain, was one of the hardest things I’ve ever written. It was definitely the hardest thing I’ve ever published on this blog. It’s scary to let our truths out, to expose our cracks to the world. But it’s also been my most resonant post, by far, based on the reactions and the responses I have received. I am glad I wrote it.

I am not alone in my pain. I am not alone in my shame. Yet we all feel alone. We feel alone because we don’t feel like we can talk about it and thus we never share our shame or our pain with others. Others who are feeling the same things and who are also unable to share.

Why is that? Why don’t we share?

Because we feel unworthy. Embarrassed. Humiliated. We might feel like we have failed everyone, not the least of whom is ourselves. We think we’ve failed our families, our partners, our friends, our coworkers. We’ve failed society. We’ve failed the medical professionals and therapists who weren’t able to fix us.

We let everybody down because we have pain. Or illness, or depression or anything perceived as not optimally healthy. We are flawed. Damaged. Defective. Unfit. Undeserving.

Or perhaps we feel we’re deserving of what we’ve got.  Maybe we did something to bring it all on. Maybe we’re paying some price, being punished, being taught a lesson.

Have you ever thought that of someone else? That they brought it on themselves? That they’re to blame, for whatever it is? Accident, illness, pain, suffering…it’s easier to swallow to think they’re at fault because the alternative would mean believing such a thing could happen to anyone. To us. To someone we love.

So we hide. We hide within a shell of armor to protect ourselves from the judgment of others, and from the judgment of ourselves (which can often be the harshest, the most cruel, the most unforgiving).

The best way I know to shed that armor–to let down my guard, to stop protecting myself from the (largely unknown and often misunderstood) judgment of others, to stop protecting myself from my own judgment, to break down these barriers–is to share my story. To let others know they are not alone, that I hear their hurt, that I understand their shame. Because I feel it, too.

Labels as armor

It was only upon shedding the armor (or at least starting to) that I could see what it was made of. That Speaker, writer, educator, advocate for living well with chronic painI could see the ways I was protecting myself.

I’d shielded myself with labels. Firefighter. Crossfitter. Heavy lifter. Runner. Paleo. Badass.

When I lost them, when I was forced into retirement, when I was sidelined by pain, I felt naked. Vulnerable. Lost.

So I searched for new ones to replace them. I tried out former firefighter and medically retired firefighter, but they felt desperate. Like I was clinging to the past.

I tried chronic pain patient and person with chronic pain and person living with pain. But they felt defensive. Trying to explain myself, my current set of circumstances. Trying to cover my shame of no longer working, my embarrassment over gaining weight and not being as fit as I once was, my inability to do the things I used to do.

Plus, I didn’t want to be a patient forever. And I was failing treatment after treatment (surely my fault) anyway, so I wasn’t even a good patient. I like to be good at things (I’m ashamed when I’m not).

I tried grad student, which stopped working after I graduated. I tried Master of Science after graduation (just kidding, just wanted to see if you’re still paying attention). I tried writer, which always felt fraudulent and arrogant. I tried coach, which didn’t really hit the right mark.

Eventually I stopped trying. This doesn’t go over so well in a society that always asks ‘what do you do?’ though.

What are we if not our labels?

During the worst of my pain my best answer to the question ‘what do you do?’ would have been ‘I exist’ or ‘I’m a wife’ with the caveat that I wasn’t much of one. As things got better I could have added ‘I read. I cook. I walk. I do gentle movement. I love and am loved.’

But these are not acceptable answers either. Bookworm is not an acceptable label. Nor walker nor gentle mover nor amateur home cook. Lover would raise some eyebrows for sure.

I was embarrassed that I wasn’t doing more, that I wasn’t more. That I wasn’t a better person. A stronger person. I was ashamed to find myself in that position.

There I was, free of my labels, naked, vulnerable, nothing to hide behind because I didn’t know what to call myself, I didn’t have a shield, I had no armor.

It was terrifying.

Freedom

Eventually I was free to figure out who I was without the labels, though, without the preconceived notions of who I ‘should’ be or what I should be doing. Free to discover what made my life meaningful, what gave me purpose, what I valued.

It wasn’t easy work, you have to go deep and going deep can be dark and scary. There are parts of ourselves we might not like, after all. It’s much easier to keep up superficial appearances, to fit in the boxes assigned to us, to act within the parameters of our ascribed labels.

Was this what made me worthy?

We are not our jobs, though. We are not our titles. We are not our labels.

Could that mean that I wasn’t worthy because I’d been a firefighter, that perhaps I was worthy because of the qualities within me that made me want to be a firefighter in the first place? The qualities that got me through years of testing and training, through an academy and that made me a good firefighter on the job? Could that mean that I wasn’t unworthy just because I wasn’t a firefighter anymore?

Whoa. That was a big question for me. It was hard to wrap my head around.

Walking a different path

And if that could be true, couldn’t I start applying that same thinking to other areas of my life where I felt shame? Had I only been worthy because I was an athlete? Because I was physically strong? Lean? Could lift? Run? Throw ladders? Could that really be what defines a person’s worth? My worth?

No.

It took me a long time to realize this. It took years. I was locked into feelings of unworthiness and shame for a long time. Desperate for new labels that could define me, that could make me worthy.

But pain has a way of changing your perspective. Of helping you find what’s truly meaningful.

I mean, did I really think those labels mattered as much as my friends and family? My husband and dog? I’d stopped being a good friend. I was a distant family member. A changed wife.

Unashamed

It took a long time to try to start fashioning a new life out of the shattered pieces of my old one, but start I did. Bit by bit.

I started with my husband. We talked. Really talked. Not superficial bullshit, not ‘I’m fine’. Not silence. I was vulnerable. I opened up. I let him see my shame, I owned up to my weaknesses, I told him my fears, worries, anxieties. I told him about my shame. And he did the same.

It took too long for us to do this. Years. But once we did he understood that he didn’t need to fix me. That when my pain flared I needed a hug, a kiss on the forehead, an ‘is there anything I can do’, not a solution. And I understood that his silences were not because he didn’t care, but because he did and didn’t know what to say or do.  Because he couldn’t fix it, and it was killing him.

We learned how to communicate within this new reality. I learned, over time of course, to not bottle everything up and just try to tough it out. That I didn’t have to be alone with the pain. I could live with, really live, without shame. I worked toward accepting pain as a part of my current reality. It just was. It wasn’t because I was being punished or because I was a bad person.

So that meant that having pain didn’t have to be punishing and, most importantly, having pain didn’t mean I was a bad or unworthy person.

Communication and vulnerability

He learned to not be reactive to my emotional outbursts. That they would pass but that I also needed to feel whatever it was that I was feeling, be it anger, frustration, sadness. And he began to see that these emotions were usually directed at a situation or sensation, not at him.

And I learned not to be so reactive, too. To not judge myself so harshly. Meditation helped me a great deal with this (I use the Calm app now). And writing and nature walks and playing outside and mindful movement.

Cross-country skiing, March 2016

We came to a better place. We became closer. We loved and were loved by one another.

I saw that being vulnerable wasn’t all that bad. That shedding some of my armor, my badassedness, my ‘tough it out’ mentality made me lighter, more adaptable, more flexible and more open. More present.

Reconnecting 

I started talking to my family again. And my friends. It’s hard when you go a long time (I went a couple years with little contact with folks) to reconnect. And the longer you go, the harder it seems. But it’s never impossible. You might not always get the outcome you want, but knowing the outcome is much easier than worrying about what the outcome might be.

I was vulnerable. I was honest. I didn’t hide my pain. I didn’t try to pretend it wasn’t a part of my life. I didn’t make it the center of my life either, though. Pain wasn’t everything, it was just a part of things, and it was ok. (Not that it doesn’t really suck sometimes, it does. But there’s a lot of not suck, too. Does this make any friggin’ sense??)

Suddenly I could start going out with friends again. We’d eat at high-top tables so I could stand and I’d stand at the back of the movie theater through a movie. We’d stand at concerts and music festivals. Not being able to sit wasn’t all that big a deal. And if my pain went up, I’d just say, ‘hey, my pain is up’.

Sometimes I’d stick it out, sometimes I wouldn’t. People would know that I’d be quieter, my decision making ability would diminish, I might be cranky and they were ok with that.

There is no right way

Granted, I’m not always good at this. Sometimes I still try to pretend I’m not in pain because I don’t want to ruin some event or someone else’s time. It always backfires, though. I’m still learning here, too, folks!

Whether I’m up front or I pretend and it backfires, the people who want to spend time with me understand. They get the deal.

And they’re ok with my other quirks, too. My fear/aversion of the phone, for one. I’ll go months without talking to the people closest to me, which many people find odd (I’m not friends with those people), but when we’re together in person it’s like no time has passed at all. We’re fully present and engaged. We cherish our time together. We laugh, sometimes cry. We live.

I’m weird. I was weird before pain, too, pain just made me weirder.

Unafraid and unashamed

We all have our shit, though, you know? My friends and family have their shit, too. When someone matters to you, and you matter to them, you just figure out how best to deal with each other’s shit. Only then can you enjoy all the wonderful parts, too.

I did lose friends, don’t get me wrong. I lost contact with a lot of folks, particularly folks I used to work with. But that’s ok, too. That’s not to say that I wasn’t sad and sometimes angry. That I’m not still sometimes sad. I’m human, and I’m ok with that, too. It serves to make me even more grateful for the friends and family I do have.

The relationships I have now are more meaningful, deeper and more full than my relationships before pain. Granted, some of that is just getting older, too, but that’s sort of the point. All of this stuff, pain included, is just a part of life and life ain’t all puppies and pizza.

Life is weird. Pain is weird. I am weird.

I’m not afraid to be weird anymore. I’m not ashamed of it. I’m not ashamed of my pain anymore either. And I’m not ashamed of my life.

Buster helped me feel unashamed - his love for me never changed :)

Buster was never ashamed of me :)

As always, thanks for reading my always-too-long posts! I just have too many words and not enough editing skills. I’d love to hear your thoughts, experiences, questions or feedback.

We don’t talk about this stuff enough and I’d like to change that.

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10 Responses to "Unashamed and unafraid: living well with pain"

  1. I think I struggled less with this in the beginning as I was never (in society’s eyes at least) that worthy in the first place. By this I mean that I wasn’t risking my life and saving people. So I had less of a problem with saying “I don’t work outside the home”. Not that I didn’t miss event organising and the horse riding and cycling and kickboxing.
    Very early on my Mother gave me a sign that says “we cannot all do great things, but we can do small things with great love” It still hangs in my kitchen. I try hard to focus on that.
    Not that I haven’t had my melt downs. When I was finally well enough to go back to work, the only job I could get was a Grade 4 admin post, the exact grade I started at 20 years earlier, while the other woman my age in the department was running it. When I emigrated to the USA and felt like I was completely starting again there was quite a bit of angsting about what to do with my life.
    I am glad you have found your authentic peace. Your article helped me clarify that I have mostly found mine too!

    • Thank you so much for your thoughtful and kind reply, Sarah, it’s much appreciated. I love the sign from your mother. And I envision those small things done with great love add up to some pretty great things for the people they’re done for. I’m going to hold onto that one! Especially when I have my own meltdowns or start to feel overwhelmed.

      I am grateful to have started this blog as it has been what has helped me find my peace. I’m not sure that I’m wholly there, or that I will ever be wholly there, but I am so much closer than I was in years past. I am glad that my post helped you clarify some things for yourself, too. I find that sharing these thoughts and experiences helps do that for me as well. And how wonderful to hear that you have mostly found your own authentic peace!

      Thank you for this, Sarah. In kindness ~ Jo

  2. Are we responsible for our pain? This is a big question, one that we must ask ourselves only to make sure we aren’t still creating it. It comes down to being present. We deal with what is happening right now. Pain is an advisor. It has many things to teach us. It just really sucks when it hurts so bad you can’t think. I am teaching a class on chronic pain and will definitely refer everyone to your blog.

    • Thank you for your thoughtful and insightful comments, Jeff. You’re statement that it comes down to being present really resonated with me. I think that allows us to take responsibility without having to assign blame, as I don’t know that blame does much good and often makes us live in the past. But we can act in this moment, we can be responsible for those actions in this moment.

      And pain is definitely an advisor, one that has taught me more than even I realize. And the realizations I have had came years after my darkest days. I didn’t start writing about or reflecting on my pain until some of the fog had cleared and some of the light had shown in. In the dark years I don’t think it was possible, I wasn’t aware enough of anything other than the pain to find out, even if it was.

      How wonderful that you teach classes on chronic pain and I’m appreciative that you will pass along my blog, thank you. Do you teach classes in person or online? I am interested to learn more.

  3. I want to change the fact that we don’t talk about these things as well. We are Jo. Trailblazers in fact! It is the weirdo’s like us that have the balls to have blogs and write posts and want to help people.

    Like Jeff says, we need to be present to listen to the pain. It always has something to tell us. I have felt very much responsible for fibromyalgia onset and am struggling to get out of ‘figure it out mode’ and while there is a level of pain that might always be there for me – there are a lot of others speaking volumes if I would just listen!

    Keep being weird,
    Terri

    • I am grateful to have a fellow trailblazer weirdo in all this, Terri! I am so glad our virtual paths have crossed and look forward to continuing to learn from your stories, insights, perspectives and experiences.

      Thank you my friend!

  4. I love this line:

    ‘I’m weird. I was weird before pain, too, pain just made me weirder’.

    Me too!

    I echo Terri – hearing someone else admit to it helps so much, especially on those days when you think you’re the only weirdo in existence going through this weird stuff. As always, Jo, thanks for a beautiful, tender and wonderfully honest piece about how hard and yet, how mind blowing persistent pain is. This is my favourite post so far.

    • Thank you so much my dear friend! That means a great deal to me. These shame posts have been the most difficult for me to write yet have been the most rewarding. We humans, we are complex aren’t we? And weird? And then to top that complexity and weirdness with the complexity and weirdness of pain. For a long time I thought I had to figure it all out. I’ve since realized I just have to try to figure it out, I don’t have to have the answers, and the best way for me to try is to share.

      I’m glad that the post resonates, and that I am not alone in all this. Thank you so much, Angelique! I’m so grateful our paths crossed.

  5. Wow, you can read my mind. I think I swear more than you. I used to kick the wall when I thought no one was looking and swear under my breath when I couldn’t take the pain anymore. But, I had to stop that when I noticed my daughter copying me. I changed my outlet to screaming out the window on a drive. It really does help. I liked your story. Thank you

    • Thank you for your kind words, Susan. It means a lot to me. And thank you for sharing some of your own story. I can relate to the swearing part! I grew up in metro Detroit and was a firefighter, I’ve tamed some of my words when I write ;) But research has shown that swearing helps with pain, so there’s that!

      I will have to try screaming out the window sometime, I can see it’s value. We all need outlets that allow us to safely release tension, frustration, pain, anger, sadness. Pain is a jumble of emotions that we have to air out now and then.

      I really look forward to meeting you in person next month!

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