Lessons of a Life with Chronic Pain

The story of a mother with trauma and chronic pain through the eyes of her daughter

I am a psychotherapist, and I am also a patient.

I am a mother and I am a daughter.

I have chronic pain, and I have childhood trauma

These last two factors overlap significantly. They are one and the same in the sense that in these cases, the brain becomes highly sensitized and alert, when it is exposed to repetitive trauma as a child. The body follows suit, by being primed to keep fighting, so long after an injury “heals”, the pain remains. And it cascades.

Highly sensitive to physical and emotional stimuli, that’s my favorite description for this state of being, not my fault, but my burden to heal. I like to think about it as having a lower tolerance window physically and emotionally. I can only handle so much spice. I can only handle so much anger.

The link between chronic pain and childhood trauma is significant, and is well-understood by science, but not understood by the general public and frankly, most doctors. This is why we have so much trouble getting the treatment we need and deserve.

Chronic pain is complex and it is frustratingly difficult, I can tell you this both as a professional and as a patient.

My own pain and trauma have the power to lead me down a dark path and lose access to many, if not all of the other parts of who I am as a person. This happens, much less often now, because I am getting the psychological and medical treatment that I need.

In 2020, Covid-19 changed life for my children. I felt fortunate to get this time with my daughter, yet I know she would do anything to just get back to finish her senior year at NYU.

As a junior, she had an assignment for her medical anthropology class, and she chose to write about me and “my illness narrative”. I was honored she would choose me to write about. It had of course occurred to me that my pain and trauma affected her,and led to her own struggles with anxiety. But I’d never heard it spoken in her own words.

When I read these beautiful words, I was stunned, and I won’t lie, tears were shed for what she has gone through, and how well she was able to capture it in writing.

I have never been more proud as a mother, for her insight, her compassion and her ability to cope with her own anxiety.

I’d like to share what she wrote.

by Sarah Carney

Sarah is Tracey’s 23 year old daughter, a graduate of  NYU, where she  studied Anthropology, Linguistics, Education and Graphic Design. She is also a comedy writer, an artist, a brick master-level Lego Builder, a drummer, an animal lover, a gardener, a roller-coaster enthusiast, a sailor, a dog-lover, a DC Universe connoisseur, a Broadway Lover, a self-proclaimed nerd, a deep thinker, an old soul, a good friend, a sister, and a surfer. She is the manager of Covid-Testing at Saturday Night Live, and currently lives in Brooklyn, NY. 

“If you looked at her [my mom’s] medical history, you would see a long list of diagnoses and treatments: interstitial cystitis, congenital stenosis, kidney stones, kidney surgeries, eight toe surgeries due to staph infection, sinusitis, sinus surgeries, neck surgeries, chronic Migraines, C-sections, myofascitis. These all contribute to the diagnosis she most consistently refers to: chronic pain. She explains her experience of chronic pain as hypersensitivity. One stimulus might be painless for one person but could feel like a knife for another. In the same way, the source of pain (the stimulus) can be the same for two people, but the one with chronic pain will experience it more. The problem as she explains it, lies in her nerves. They are primed to be extra sensitive to stimuli. This sensitivity also comes about in other ways; a self-proclaimed super-taster, she can detect any amount of bell pepper in a dish and will refuse to eat it because the taste is overwhelming.

I think of it like a microphone- if you turn the sensitivity up, you can pick up the quieter sounds, but louder sounds become overwhelming noise. This sensitivity can be positive and negative. While it makes pain and bad tastes more unbearable, it also makes laughter and empathy deep and more enjoyable.”

To Tracey and many of her patients, chronic illness is an experience of invisible suffering. Without an injury to point to, it can be hard for other people to understand. She illustrated this with examples of how she was treated by in-laws and other family members. SHe explained that when she was recovering from her toe surger(ies), people were more sympathetic and understanding. They had a physical injury they could point to and that they could understand. The daily struggles of chronic pain, however, are less clear to outsiders. “You’re always fatigued,” she explained, “everybody gets annoyed [with you].” As an outsider myself, it is hard to understand what exactly she is experiencing because I don’t have as much of a reference to compare it to. My only reference was the temporary pains we all have, which would make me ask, “is this how she feels all the time?” I saw the effects of the illness and pain more clearly. Seeing her limitations and comparing her to parents who were “well” made it clear to me how being in pain affects your life. While I couldn’t feel her pain physically, I could empathize because I could feel the emotional ramifications of the illness. Not only did she experience the physical sensation of pain, she also experienced judgement, shame, and a loss of ability to do things she loved.

My mom couldn’t be active all the time like the other moms. She didn’t have the energy to take us out as often as we would want to. She couldn’t sit in restaurants very long because of the uncomfortable chairs. She couldn’t hang out with friends all night like they wanted to. I saw these things, and I saw their effects. Sometimes, despite her best efforts, it affected me, and I too would grieve her loss of mobility for her sake and my own. With every surgery, I would never worry if she was going to die. I worried that she would never be the same as she used to be. I saw her at her worst: when she was bed-ridden and taking medications with awful side-effects, smelling like that awful pain balm I hated. I saw her at her best: when she appeared like anyone else, surfing again and playing frisbee with us and the dogs. I also saw her at all the in-between times. It was frustrating. She grieved the loss of her ability to do things she loved, and so did I. Even her care contributed to a loss of life: when on opiates, she couldn’t drive places, and the constant medicine changes and dealing with insurance and pharmacies made her frustrated. When money was tighter, we felt the strain of paying for surgeries and medicine. It was an added stress on top of the other stresses of life, and it was one that was hard to quantify or see. It wasn’t going to go away. She had to grieve the potential future she was missing out on. She could no longer do everything she wanted to; she was limited. What was worse is that we couldn’t understand it.

The invisiblity of her chronic pain and trauma lended itself to being hidden even from herself. For the longest time, she thought that her experience was universal and that everyone else just handled it better. She wondered what was wrong with her, and spent much of her life trying to figure it out. She asked everyone about themselves and their experiences. “I was absolutely fascinitated in other people and how they coped with life” she said. She became a therapist to help others like her. As she trained for this career, she didn’t fully grasp that this period of self-discovery, she would finally find names for what she was going through. She found comfort in diagnoses because it meant that she wasn’t just weak; she had something she could name that was wrong. It meant she wasn’t “weak or crazy.” She could point to a diagnosis and other people that have it and say “it’s real.” It was so invisible, she thought she was making it up: that everyone experienced pain and anxiety, they could just cope with it better. In a strange way, knowing something was wrong with her on a biomedical level was a comfort. Even with these names, which changed over time with new research, more appropriate diagnosis of “Why me?” Understanding the mechanics of her experiences was helpful, but the “why” was still a missing piece. What caused all these issues? Why did it have to happen to her?

The missing why, as she explains it, was trauma.

She was never beaten, under-fed, or sexually abused. She didn’t experience any of what her abused patients had, yet she resonated much of what they were going through. With therapy, she realized that she had experienced trauma, but unlike the official descriptions of adverse childhood events (ACEs), her trauma was primarily emotional trauma. It had a name; Complex Developmental Trauma. (Complex Developmental Trauma is a particularly severe “type” or PTSD related to being exposed to trauma between the ages of 0 and 3, when the brain is rapidly developing and making neural connections that can cement a brain in the survival mode developed to cope with the surrounding environment. She described her trauma a series of “emotional bombs,” , which cause PTSD similarly to the bombs that soldiers are subjected to.

Her emotional bombs started when she was in the womb. Her older sister, Liza, was actively dying. She was born into an environment of stress and grief. There was an assumption that Liza would die and Tracey would be her replacement. My grandmother expressed this numerous times: “you should feel grateful, without Liza’s condition, you wouldn’t have been born.” Liza didn’t die, but her illness resulted in mental retardation which, as it was explained to me as a kid, meant she would not get past a 5th grade reading level. Though she was younger, Tracey matured faster than Liza. This was hard on her: she received less attention and had to deal with the stigma and difficulties of having a handicapped family member. My grandmother had a difficult childhood herself and an attitude that since they had money, unlike her at a young age, everything was fine. Why should Tracey complain when she had all her basic needs met?

She responded to this stress and lack of attention in many ways when she was a kid, and much of this would carry into early adulthood until she would find the treatment she needed. When Tracey finally got fully into the therapeutic process, and finally able to trust a psychologist and psychiatrist. In one session, she exclaimed “it’s all about my mother? How cliche!” This revelation became an essential part of how she explained her illness. She applied the models of how ACEs affect all kinds of health issues to herself. Though literature on ACEs tends to focus on different kinds of abuse, she saw that her own experiences had similar impacts. Thus she extended the definition to apply more broadly to many kinds of emotional trauma.

An essential piece of her story is that her terrible experiences of pain, trauma, and grief led to her ability and drive to help people. She draws on her experience to help as a therapist to people with similar problems. Fortunately, our socioeconomic class allows her to treat her illness through medicine, massages, physical therapy, and the ability to afford luxuries that make life fun. Most people do not have that, which is why her passion project is to open a clinic that combines mental, physical, and medicinal care for people with chronic illness in one place. This aspect adds an important level of meaning to her illness. Her suffering helps her ease the suffering of others. It helped her feel a deep sense of empathy for people, that helped in her job and in her parenting. The illness is part of her story, and even though it is hard, some good