Learning to Live Without Fear
Alice is a 35-year-old woman from the Canadian province of Saskatchewan who has spent many years living with pain. Her experiences with pain include migraines and back pain, but it was four years of relentless pelvic pain that made her life smaller and smaller to the point that suicide felt like an “entirely sound and logical” solution. During this time, Alice saw every type of healthcare provider she could find and had every possible diagnostic test. She told me that she probably received 15 to 20 different diagnoses of the pelvis during this time—and every single one was wrong. In desperation, Alice turned towards something that she was initially skeptical about: Dr. John Sarno’s ideas about Tension Myositis Syndrome (TMS) and its treatment methods. The TMS approach changed everything for Alice. It has been the foundation for her being able to reconnect with a richer and more meaningful life where she no longer operates from a place of fear.
It Was This or Kill Myself
Alice had to go through a lot to get to the point where she was willing to explore the TMS approach. She explained to me: “My whole family has healthcare providing backgrounds that completely comes into conflict with everything I’ve learned.” She spoke about many people still misunderstanding pain as a “physical experience solely,” and that even though that is “so wildly wrong,” it being difficult to shift peoples’ perspective on pain if they do not want to hear it. I asked Alice what helped her to be receptive to it, and she shared with me: “I had to first go to every physiological treatment possible and have no relief. You know, physio, naturopath, chiro, every fucking specialist humanly available. I saw everyone over three years.” In seeing these practitioners, Alice not only did not find relief, but the things they told her contributed to her life becoming smaller and her fear becoming greater. She wrote to me about the kind of messaging she received:
The physios who say it’s unsafe to bend over again. The surgeons who say you’ll never do sports again. The gynecologists who say it’s unwise to carry a baby. The naturopaths who explained, ‘if you could just reduce your inflammation…’ The therapists who say you just need to manage your stress.
Alice developed an eating disorder through her efforts to find relief from her pain because she was told she could not eat and drink so many things. She became too scared to have sex with her partner because of the pain flares it led to and was told by practitioners, “Well, just don’t have sex.” Alice shared with me that through “all this fear-based messaging, [she] became so terrified of everything.” It was from this fearful place that Alice started to feel like suicide was the only way out. She told me about her thought process at the time: “You’re gonna live with a partner and never be able to have sex. You’re never gonna be able to eat good food again, and it’s like, well, then, why the fuck am I? Like what is the point?” She elaborated further: “Your motivation for living or moving forward are taken away from you as soon as the specialist prescribes a limited existence.”
In the midst of what she describes as a pit of despair, Alice received the recommendation to explore the TMS approach from a renowned Canadian physician that she connected with through her work. This approach had an almost immediately positive impact on Alice’s experiences with pain. She told me: “After I read one of the books, like my migraines, that I had had for years stopped. They completely ceased. I’ve never had a migraine since then.” There was a way that the stories in the TMS books validated her challenges with pain in a way she had not experienced before. She shared with me: “When I put down that book, I think I just cried for like a day because it was like reading my entire life experience, like page for page.”
Access to Alternative Approaches
Alice made a point of telling me: “I am very privileged to be able to say I’m living better and doing well because I’m in a huge amount of debt, but I’m still able to, like pay my bills.” Her initial successes with the TMS approach led her to “consume every TMS thing available on the planet,” and that consumption cost money. She told me: “I’m a student, so I’m not super financially well off, but I’m in a better place than so many other people.” Alice has worked with people living with chronic pain who live in shelters, and many of these people were not even able to afford their pain medications. The TMS books cost Alice hundreds of dollars, and she took an online course in the TMS approach that cost around a thousand United States dollars. While Alice credits the TMS approach as an important part of why she is living well with pain, she stresses that having had the financial resources to access this approach was essential. She emphasized to me: “The financial burden of doing alternative, so-called work, is massive and it’s not accessible.”
No Longer Consumed by Fear
When Alice was struggling with pain, fear was a significant factor in her struggle. Her fear was less about “the physical sensations in and of themselves” and more about what she describes as “the unknown factor.” What could be at the root of this pain? What might be the implications of doing all the things that healthcare providers have told me not to do? What harm might be happening when my pain gets higher? Alice shared with me: “Your existence operates within a system that is so acutely aware and scanning for any potential discomfort that even the smallest twinge can set your mind and body on fire.” It was in working with the TMS approach that Alice began to find freedom from this fear and hypervigilance. She shared with me about what this looked like for her:
The big part for me was having to take all this messaging that I got from the doctors and just do the complete opposite. Like don’t have sex, I just had to start having sex like all the time again to get over it.
She was told not to go for long walks, and she started taking her dog to the park for an hour. And she told me she thought to herself: “If I fall down and can’t function like, I guess I’ll call 9-1-1.” The fear of the unknown was not determining how her life played out anymore. As she told me directly: “Living well means I no longer let the fears consume me.”
Alice has found herself in a place now where she responds very differently to pain. Part of her journey with the TMS approach has involved learning to address past traumas. She shared with me some of the things that this work has involved: “All the things I need to learn about, you know, not emotionally repressing, staying present, not panicking, doing whatever I can to make myself feel safe in that moment.” She emphasizes that she has been “learning to say no, learning to listen to [her] body, learning to not stuff down [her] feelings, learning to stay present and mindful in all moments, [and] learning not to panic but to self soothe.” On the other side of the suffering that led to her wanting to end her life, Alice wrote to me: “Today, my pain is a blessing, an experience that was signalling to me things needed to change.”
Co-regulating in Community
The weekend before Alice and I spoke, she ended up in the emergency room for pain-related things for the first time in three and a half years. Being in this context reconnected Alice with the way that healthcare providers had increased her fear so significantly. She shared with me about the experience:
But then as soon as I got to the emergency room, the doctors like, they start seeing your labs and doing the tests. And they’re like, oh, you probably have kidney stones, we gotta run a CT immediately, and I’m like, I know I don’t have that. And just the escalation of the fear that you get from interacting with other people based on how they’re reacting to you, then I started panicking and spiraling.
When the pain and the fear increase, Alice’s suicidal thoughts come back too. She told me: “Even years later, if I get a bad pain flare, my brain will still go there.”
I asked Alice about what happens when her pain increases and these old habitual thoughts come back. She told me that she now actively seeks out co-regulation within her community. She explained to me:
It’s become really about, you know, finding those people that I can go to and co-regulate with, to be like, I’m having an episode, I just need to talk it out, getting the reassurance from friends … getting like a hug from my boyfriend … petting my dog, getting out of the house.
There are also a lot of online resources available through the TMS community that Alice is a part of that she finds helpful to regulate her spiraling, including podcast episodes, YouTube videos, and online TMS-informed yoga classes. Being able to access these different TMS resources offered by people around the world has been invaluable to Alice.
I Found My Power
Through working with the TMS approach and refusing to accept that the prognosis she had received would be her reality, Alice began to recognize and trust that she knew her body better than anyone else. She shared with me: “It was through resistance that I found my power—power that I had handed over to medical professionals, people I was expecting to ‘fix me’. But I was the only one who was able to do that.” Alice used to rush to see a specialist any time she had a minor fear or concern, but she responds very differently now. She told me: “For me the doing better or the living well bit has really become, you know, the recognition that I am my own best resource in managing when one of these flares may be happening.”
Alice sees the power dynamic that can be at play between a doctor and a patient as a factor in her years spent struggling with pain. She explained to me:
It comes down to finding the right care provider that will listen to you because there are so many times that I waited six months to see a specialist, and I would roll in with the academic literature and be like this is what I think I have, can you do these investigations for me? And again, there is a gender dynamic where I go in and see the older male physician and he says, you don’t know what you’re talking about, I know better than you. And I’m like, no, here, look at it, I’ve done all the research, I know what I’m talking about, and they are just like, no, I’m the doctor, you’re the patient.
While Alice highlights gender as a factor complicating the power dynamic between her and a male doctor, she emphasized that it can get even more complicated in other situations, using the example of a White physician and an Indigenous patient to illustrate her point. Although Alice had many experiences being dismissed by healthcare providers, she also believes that her healthcare connections through family and work privileged her in navigating the system. She told me: “If I was anybody other than myself, I don’t think I would have gotten as far as I did because I see how doctors … treat patients with pain.”
Living well for Alice has involved balancing the use of her tools and the TMS approach with supports from the medical system when necessary. She shared with me:
I became so resistant to the medical system because they hadn’t helped me and they had harmed me more than anything that I had to learn to find the balance of like, what can I do 100% for myself to help myself versus what are these other tools I can grab from just to make me feel safe in this moment.
Alice spoke about taking Tylenol or going to the emergency department as examples of utilizing tools from the medical system. The way she is using these tools is different now though. There used to be a dependency and a desperation as she saw the healthcare providers as the people with the power to make things better. Now Alice turns towards these resources as tools to support the work she is doing to support her health. She said to me: “That comes full circle back to I’m my own best resource.” She has taken ownership over her health. She put it this way: “I’ve come to learn that my body is a better measure for how I am doing than any tests or workups that could be offered to me. It has become my safe place.”
My Dog Changed My Life
Alice got a dog in the middle of the COVID-19 pandemic, right around the same time that she started working with the TMS approach, and she considers her dog to be an equally important part of living well. She told me:
My dog absolutely changed my life. Like, she has been my best support through my healing journey. ‘Cause you know I finally had a reason I had to get out of bed. So, I was exercising more. I was working from home alone, so it reduced that isolation quite a bit and it just gave me something to focus on.
As noted briefly above, Alice also finds that being with her dog and petting her dog helps her to regulate her emotions and to reduce her stress levels. Being able to support others through her dog has also been an important part of living well for Alice. She shared with me:
And then we got involved in therapy dog work in the hospitals and stuff like that. Being a part of those communities and being able to help other people in pain has been like probably the most instrumental thing other than like finding out about TMS work for me.
That’s Giving Me Purpose
Being able to help others who are struggling like she struggled has been a huge part of living well for Alice. She makes herself available to people living with pain who she does not even know because she finds a sense of purpose in doing so. If the horrible experiences she went through have led her to be able to help others going through similar challenges, she is able to find some meaning in an experience that was otherwise awful. She said to me: “If I know that other people are living what I have lived and they are in the space that I used to be in, I just, I don’t want anybody to ever have that experience.” Feeling this motivation to help others is another important part of living well for Alice.
There are layers to the way that helping others supports Alice. Not wanting others to suffer is part of what motivates Alice, but she also told me: “For me, specifically, it’s very much a protective mechanism against suicide.” Alice vulnerably acknowledged that when her pain and fear increase, and she starts to wonder about the point of living in pain, knowing that she is a meaningful support to someone else who is suffering keeps her here. She is also motivated to take care of her own health so that she can continue to be a support for others. She told me:
I went through these trials. I’ve learned all these things. I want to pay it forward, like that keeps me motivated to stay well and make sure I’m taking care of myself because I feel like this type of work is important because pain patients aren’t getting the information and the resources and the education that they need to live and do better.
Advice for Others
When Alice works to support others in pain, she emphasizes the importance of taking ownership over your health, which has been such a central piece for her. She recommends that people learn as much as they possibly can about specific diagnoses they are given and that they actively advocate for themselves. Bluntly, she told me: “If you’re too scared to talk back to your doctor, like good luck, it’s not going to happen.” She believes our healthcare system is too overwhelmed to adequately support people living with pain, and she sees taking power back from healthcare providers as an important part of the recovery process. She explained to me: “We give up so much of our own power to the medical system and the healthcare professionals and you need to realize that you have the power and capacity and abilities to make changes for yourself.” For Alice, doing better and living well with pain has been about exactly this—truly realizing the power she has to make change for herself and doing everything she can to change things.