While living with chronic pain has a tremendous impact on one’s physical abilities, what people rarely realize is how all encompassing the chronic pain experience really is. What does it mean to plan your future when your body feels like a ticking time bomb? How does it feel to disclose your pain to others, only to be met with doubt and blame? How do physical limitations impact your social and professional life? How do you cope with medical trauma when you’re dependent on the medical system? How can you build healthy intimate relationships when your body is a source of shame? How does the exhausting search for diagnoses and treatments leave space for living your life? And how do all of these factors impact your mental health? The weight of these questions is simply staggering, and unfortunately, it is almost completely ignored in the current models used for chronic pain treatment.
The medical and mental health systems do not adequately serve people with chronic pain
The complex psychosocial needs of those living with chronic pain often fall through the cracks of both the medical and mental health systems. Most medical treatments focus exclusively on the physical body, and most mental health approaches only look at one’s psychological conditions. Patients receive partial treatment that does not take into account the complexity of their lived experience.
“I often feel like the people who are supposed to help aren’t really willing to listen to the full extent of my experiences,” explained an anonymous interviewee, “The second I try talk to my doctor about the way my pain controls my life, she shut down, and when I mention my physical pain to my therapist, he tells me its not his domain. Not only am I drowning in my own suffering, but I am completely alone. Even my friends and family accuse me of exaggerating or being hysterical”
It is no longer a secret that physical and mental health are inextricably intertwined; research increasingly shows that many people living with chronic pain patients suffer from depression, anxiety, and PTSD. Chronic pain cannot be effectively treated without addressing the degree to which it impacts and is impacted by mental health and trauma. Left unaddressed, the mental health struggles of chronic pain further exacerbate physical pain and illness, and vice versa, creating a vicious cycle that can lead to the breakdown of personal identity, social support, and trust in the medical system.
Live the Pain: A revolutionary approach
Seeing the critical gaps in services provided to those living with chronic pain, a team of experts from around the world founded an organization to transform the way chronic pain is treated by approaching it through the lens of mental health and trauma. Among other programs, Live the Pain runs unique trauma-informed psychoeducational therapy groups for people living with chronic pain. The results have been overwhelmingly positive, and more people turn to Live the Pain to inquire about new groups everyday. As one participant put it, “No one leaves this group the same way as they were when they came in.”
The power of a group experience
People living with chronic pain have faced so much doubt, suspicion, and gaslighting from those around them throughout their lives. From a friend insisting that they “look fine,” to a sibling accusing them of “being dramatic,” to a doctor suggesting that “it’s all in their head,” it is not uncommon for those living with chronic pain to begin to doubt their own sanity. Especially because their pain is often invisible and unpredictable, people living with chronic pain often feel different, misunderstood, and isolated.
When exploring their chronic pain experience in a safe and supportive group environment, participants are able to feel normal, understood, and validated for the first time in their lives. “The central experience of the group is visibility. We saw one another and ourselves through the eyes of another person, with so much positivity and generosity,” described one participant, “I have to give credit to the facilitators, who paid such careful attention to each and every one of us…Even just this experience, of feeling like you are truly being seen and respected for who you are and what you bring to the group, this feeling of true visibility, is very healing.”
The support of a group environment allows participants to form deep and lasting relationships in a way they may not have managed to in the past. “I feel less alone, like there are people that understand me,” added another participant, “The friendships that were formed in the group are based on honesty and love. Everyone showed up as their most authentic selves.” This level of connection gives those who often feel like outsiders a place that feels like home. “Out in the world I’m like an odd duck that no one understands,” one participant said with a laugh, “Today,I no longer feel this way. Now, I have my coop…I shared things here that I’ve never told anyone.”
The significance of a trauma-informed approach
In addition to going through this transformative process together with other people who understand the chronic pain experience, the novel approach provides participants with a new way to understand themselves, along with evidence-based tools that they can take with them for life. Trauma is deeply intertwined with the chronic pain experience, whether it be the trauma of physical pain, an accident, a life-threatening illness, violating medical procedures, not being believed, or the trauma of living a life plagued by uncertainty.
“Looking at pain through the lens of trauma is innovative and spot-on,” confirmed one participant, “It was the first time that I heard of this concept, and it’s completely true, without implying that the pain is ‘all in your head’. Rather, it explains that our physical pain is much deeper and more complicated than we may have thought.”
By applying the research and methodologies used in the world of trauma to chronic pain, people suddenly have access to a wide variety of tools that can help them throughout their lives. “I can now identify where my pain stems from in my body and what techniques can calm me down during an attack,” explained one participant. “For me, it was very important that everything was based on research, and not just a bunch of people sitting around talking about our feelings. There is a lot of nonsense out there, but here it was different…I came out focused.”
When viewing physical pain through a wider lens, participants are finally seen by others and themselves as a whole being, which creates many opportunities for healing. “Dealing with the emotional aspects of my pain has also improved my physical health,” affirmed one participant, “I saw my pain from a different angle, and it has brought much more awareness into my life…I have practical tools that help me on a daily basis.”
Finding your own path
People who live in chronic pain are often taught to doubt themselves, their bodies, and their own experiences. In a society that often puts the ultimate authority in the hands of doctors, those that live with chronic pain can spend their lives on a fruitless scavenger hunt between well-meaning specialists who encourage them to take medications, undergo surgeries, and invest in treatments that may be ineffective, or even damaging.
At Live the Pain, no one promises a magic cure or tells you what to do. Rather, the groups give participants the space and tools they need to process their struggles and emotions, rebuild relationships with their bodies, learn to trust their instincts and experiences, communicate their needs, and find their own way forward. “For once, we were in the center – each and every one of us – not the approach or the medicine,” gushed one participant, “Finally, I saw myself. I sat with myself, cleaned away everything, and was able to begin to rebuild from scratch.”
Being truly connected to themselves and their needs enables people to communicate with others in a far more healthy and effective manner. One participant emphasized how the experience has helped her advocate for herself within a complex medical system: “Today, I know what my issues are, and I feel comfortable approaching my doctor and telling him. My doctor needs to listen to me. I show up with confidence. This has been the first time in my life that people have said to me so many times, ‘You know. You’re right. You felt it.’ Live the Pain emphasized the fact that we know how to say what hurts us and what we feel, and we have the right to say this to our doctors.”
A brighter future
The chronic pain experience is challenging for everyone involved; it is exhausting to live in constant physical pain, difficult for medical professionals to diagnose and treat, and nearly impossible for society to understand. However, the success of Live the Pain’s treatment groups have given so many people hope, demonstrating that there is always another way forward, as long as you are willing to do the work.
Each participant shows up to the group with his or her own unique life experiences, challenges, baggage, and diagnosis. Thanks to the courage of the participants, the expertise of the facilitators, and the power of the content, they embark on a transformative journey together that brings each participant hope, healing, and movement in their lives. As one participant summed it up, “For the first time ever, I learned to accept that pain will always be part of my life, but I still have the ability to live. I don’t need to wait until the pain passes in order to live my life or make something of myself.”
In addition to treatment groups, Live the Pain develops training programs for mental health professionals and research and educational campaigns that bring the impact of mental health, interpersonal relationships, and trauma to the forefront of the discussion about chronic pain. For more information, visit www.livethepain.org or contact firstname.lastname@example.org