I’m Not Afraid of It Anymore
Turtle is a man in his forties from the southeastern United States who has lived with chronic back pain for over 20 years. Turtle’s father also lived with excruciating back pain, and while his dad persisted in trying new treatments and in efforts to stay engaged in their community, Turtle feels like his dad suffered until he passed away. Turtle feared that this would be the trajectory of his life too, almost like he was destined to suffer like his dad did. Around two years ago, however, Turtle found himself carving out a different path. Moving away from the fear of what his life might look like, as well as the fear of pain itself, has allowed Turtle to come to a place where he feels he is “living well with pain to the fullest extent possible.”
You’re Not the Man that You Need to Be
When Turtle was struggling with persistent pain, he was still able to work full-time and attend to the necessities of life, but his pain would flare up frequently and he was not enjoying life. Everything had a tradeoff. If he pushed through to get work done in the yard, it would leave him hardly able to do anything for a few days. He lived in constant fear of taking a misstep that would lead to a pain flare and take him out. Another part of not enjoying life for Turtle was a persistent sense of inadequacy. He shared with me, “I’ve definitely had my low moments, depression, because feeling like you’re not the man that you need to be, you’re not the husband that you need to be, you’re not the father that you need to be.” He recalls feeling miserable at times in the past when his young daughter would “help daddy take his shoes off” because he was not able to do it himself.
Turtle felt like he was missing out on things in life. He told me that his back pain “defined [him] and limited [him] for so many years.” For over two decades, the story that he could not do things because of his back pain determined what he did and did not do. Having experiences where he was told by healthcare providers not to do certain types of movement increased Turtle’s fear considerably. He told me, “I know, for me, when I heard that, it instilled fear in my life and it restricted me.” When Turtle was suffering with pain, he felt limited and fearful, and he spent a lot of time worrying about his pain.
Men in the South
When I asked Turtled about social factors that potentially played a role in him struggling with pain for as long as he did, the first thing he named was the culture of men in the south. He explained, “The way that we’re raised in general down in the south and what’s expected of us as guys … I’m sure that played a factor in it.” With respect to health challenges, he elaborated, “You don’t really go to the doctor much, you don’t really talk about your issues.” And his personal experiences going to the doctor would sometimes deter him from asking for help again. He shared with me:
When you do go to the doctors, at least in my experience, I know they’re overwhelmed with how many patients they’re seeing, they only have an allotted amount of time, and for me just the way that I am, if I’m talking to somebody, I can tell if you’re listening to me or not. If they’re not listening to me, basically that ends the conversation for me.
So, when Turtle would go to see a doctor, he had experiences that led him to withdraw and stop sharing about the challenges he was facing.
In addition to not feeling listened to, Turtle found conversations with doctors to be one-sided. Turtle’s experience was that physicians would offer a treatment option that he could say yes or no to “instead of really unpacking what’s going on.” Turtle believes that “there needs to be more questions asked of those of us with chronic pain.” He highlighted that no one asked him about things that happened when he was young or about what happened with his dad, and told me:
That was a big part of my own chronic pain journey, and nobody connected those things. It was just, this is what we see on an image, this is what we see on a test, this is what we have to offer, and for me those options that were given to me, they just did not work.
I Don’t Want to Have to Do this Again
In the fall of 2022, Turtle found himself preparing for a third major surgery. He had previously had one on his neck, one on his lower pack, and this third one was a second neck surgery. Turtle understood the need for the second neck surgery, but he did not want this to keep happening. He shared with me:
I was ticked off. I was upset. I was angry—here I am going again with another surgery, having to deal with the insurance company again, going to be out of work again, and what’s the other options out there? I don’t want to have to do this again with lower back. I don’t want to have to do this with my neck.
The idea of having to keep having surgeries frustrated Turtle, and this frustration led him to begin learning about things that would change the course of his life.
Becoming His Own Coach
After his second neck surgery, Turtle went back to school to train as a health and wellness coach, specializing in chronic pain. He had time to pursue this training because he was off work recovering from the surgery. He told me: “I signed up, and I joined the class, and it was the best thing I’d ever done.” Learning about pain neuroscience is what Turtle believes really began to make the difference for him. This education helped him “understand why [he] had been dealing with lower back chronic pain for 20 plus years.” He described learning about pain as a process similar to putting together a puzzle, and “the end result was a new image of who [he is], and it’s not defined by chronic pain.” A central shift that came about for Turtle in his learning about pain is that he has been able to reduce his fear of pain and movement. With conviction, he told me, “I’m not afraid of it anymore.”
Working With Fear
As Turtle and I spoke further, it became clear that fear still sometimes arises for Turtle in response to pain, but he now navigates it in a completely different way. As he put it, “I guess I shouldn’t say that I’m really not worried about it anymore. I can feel myself when I start to want to think like that and I’m able to stop myself.” He shared with me a particular example of a sensation he experiences in his back: “Sometimes I’ll feel my back, my lower back catch, and it’s hard to describe, it’s almost like a sharp, like a needle feeling or something like that.” He described his response to this experience in the past as going “to the extreme, don’t move, don’t do anything.” There was a fear of what would happen and a feeling of powerless in the face of whatever increase in pain was to come. Although there may still be a flash of these old fearful feelings, Turtle shared that his understanding of pain neuroscience has led him to respond in a very different way:
If I have that feeling, again, it’s just like I’m grounding myself. I’ll take a breath, and I’ll move into it. So, I felt my back catch and instead of just tensing up, I’ll move into it. I’ll do some light stretching, or I’ll do some light twisting to I guess reassure my body, yeah, that’s a feeling but it’s okay so it’s telling my brain, it’s telling my body, don’t go to where you used to go, just breathe, move slowly, it’s all right.
Instead of resigning to a pain flare, Turtle described his process as being proactive about it. He does not stop living; he keeps going.
A Sense of Safety
In addition to decreasing fear and responding to it differently, an important part of living well with pain for Turtle is a sense of safety. He told me: “I have learned to be safe in this body.” Turtle’s pseudonym for this research, as well as Figure 1 below, reflects the turtle being a metaphor for this safety. Where Turtle lives, there are a lot of box turtles, and box turtles can pull themselves completely into their shells and box tight to protect themselves. Turtle experiences himself now as having a similar core of safety. Then, he shared with me, “From that shell I’m able to stretch out, I’m able to live my life but I still have the safety that I can feel within this body even though I still have got the issues that go on.” Despite the fear of movement instilled in Turtle by healthcare providers over many years, Turtle now believes that it is safe for him to move.
Agency in the Face of Pain
With fear no longer determining how he responds to pain and a foundational belief in his safety, Turtle has come to feel much more empowered in the face of pain. In the past, a flare-up of his pain would have led to a flooding of worst-case scenario thoughts. Do I need another surgery? Do I need more injections? Am I going to have to go through that difficult process again? Now, instead of imagining the worst-case scenario, Turtle focuses on what he can do to help himself feel better. As an illustration, Turtle walked me through how he might respond to waking up and feeling stiffness in his back and numbness in his legs: “It’s like all right let’s stretch a little bit, let’s breathe a little bit, let’s get our mind focused. … I know how to calm myself down and not go to that catastrophizing.” Turtle is not “seeking to be pain-free anymore,” rather, he is focused on navigating his pain in a way that allows him “to participate in and enjoy life.” He told me that the question that guided his exploration of self-care techniques was: “Even if the pain never goes away, can I have a better life?” And Turtle participating in this research study is a testament to the fact that he believes he has found a way. As he put it, “It’s been a struggle, but over the last two years, it’s been a whole lot better.”
Present in the Moments of His Life
As Turtle moved away from the constant worrying that he would do something to make his pain higher and be taken out of his life for an unknown amount of time, he found himself able to be present with what he was doing. It used to be that when he was doing something he would be heavily focused on how doing that thing would impact on him for the days to come. In no longer worrying about that, Turtle has found more enjoyment in the things that he is doing, and he experiences himself as living with a calmer state of mind. He described it to me this way: “I’m a lot more calmer, a lot more at peace with the things that I can’t control and more empowered for the things I can control.” Turtle shared with me that others have commented on him being calm throughout his life, but he always felt high strung on the inside. He describes this experience of living with a calmer state of mind as one where his inside is starting to match his outside.
Feeling Healthy and Navigating Pain Flares
Turtle is holistically in a better place now, and even though he is in his forties, he told me: “I’m in better physical shape now than I was when I was 18, 19 years old and at that time, I was going to the gym for five hours a day.” Turtle knows that he is “not going to necessarily eliminate all of [his] pain,” and he cannot prevent a flare-up, but how he responds to a flare-up has really changed. His last flare-up lasted seven days, and he told me about the experience:
Even though I was still hurting, I knew that I needed to move, I knew that I needed to do some stretching, I knew that I needed to stay hydrated. I knew that I needed to get my mind clear and not be so negative about those things. So even though it took a while to come through that flare-up, the way I responded was completely different and my wife even noticed that. She’s like, you didn’t do what you would typically do.
Being in a holistically better place for Turtle relates less to the absence or presence of pain, and more to feeling safe and empowered to move forward in his life in meaningful ways.
Sharing What He Has Learned
A desire to help others living with chronic back pain is another important part of Turtle’s experience of living well. And for Turtle, this desire to help others is a way of honouring his dad. He shared with me, “I’ve done this for me, the learning, certifications, all that, and it’s definitely helped me, but I’ve done it in honor of him.” It is painful for Turtle to reflect on his father never having had access to the help that he needed, and Turtle’s desire to help as many other people living in similar situations as possible is in part motivated by it being too late to help his dad. He has found a sense of meaning and purpose in working to help others find their way to living well with pain.
Google is Your Friend
When I asked Turtle about what advice he would give to others struggling with persistent pain, he emphasized the value of learning as much as you can about what is going on in your body and what alternatives are out there. Specifically, he said:
What I’ve told myself these last two years is: be hopeful, be open-minded, but go beyond being open-minded, actually take the initiative and search out what’s best for you, don’t just be at the mercy of people telling you what to do.
Prior to training as a health and wellness coach, Turtle experienced himself as being at the mercy of the healthcare system. He compassionately asserts: “They do their best, I don’t fault them, but I don’t think they’re equipped for chronic pain the way that we need it.” Through his pain challenges and his father’s, Turtle has experience navigating different healthcare structures in the United States, but none of what he experienced was patient-centred care taking a whole-person approach to pain care. As I mentioned above, Turtle experienced being offered one treatment intervention that he could say yes or no to, and he wants others to know that there are more options. He told me: “I know my goal now is to educate people in what the other options are.” Turtle believes people in pain need access to more patient-centred care, and through his pain coaching, Turtle hopes to be a part of helping others access this type of care—and to honour his father in the process.
- Image submitted by Turtle as part of his response to the question, what does “doing better” or “living well with pain” mean to you? From Dreamstime, by Andy Keylock, n.d., (https://www.dreamstime.com/11764643). Copyright by Andy Keylock. Reprinted with permission. ↩︎