Chronic Health Conditions and Psychotherapy
September is Interstitial Cystitis (IC) Awareness month (which is new information to me hence this being published in the middle of the month…Anywho! Here we are and here we go). This is an opportunity for raising awareness and joining a larger conversation about the intersection between chronic health conditions (highlighting IC in this article), mental health, and psychotherapy.
What is Interstitial Cystitis (IC)?
I prefer using this definition from the Mayo Clinic because of their incredibly brave attempt at supporting people with pronunciation: “Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome” (Mayo Clinic, 2021)
Symptom presentation is unique to individuals and may vary significantly across a person’s life. Here is a list of frequently reported symptoms, but please note that this list is not exhaustive:
Frequent Urination
Urgency
Incontinence
Pelvic Pain
Pain During Urination
Pain After Urination
Discomfort During Intercourse
Bladder Pressure
Changes in Bowel Movements
Increased Pain with Certain Triggers (foods, drinks, stress, physical activities, and/or menstrual cycle phase(s)).
As someone who lives with IC, I share a particular proximity to the psychological, social, and emotional challenges that IC has woven into daily living. The impacts of IC have seeped into every facet of my life, just as I know it has for many others who were diagnosed (or not yet received a diagnosis) with this condition they never expected, and certainly never asked for. In becoming a therapist, we are encouraged to sort through the experiences and locate the communities that are important to us so that we can tailor our efforts accordingly, so that we can tether our practice to passions and beliefs we hold tightly to our chests. I am deeply aware of the need for IC to be better recognized and tended to in medical practice (Advocacy! Advocacy! Advocacy!), and I also see the gap where psychotherapy services are critical to holistic treatment and care, yet not being recognized as such quite yet. It’s my goal to see this change.
I can personally attest to the work that medical providers and specialists like Pelvic Floor PT’s do for those with IC. These providers are not only important for addressing IC through their specialized disciplines, but these supports are also often crucial in the lives of those with IC as they gift us their expertise alongside community and hope. At the same time, we understand that this condition—in it’s complexity—may demand that we embark on a (often long) journey of trial-and-error where it can take several strategies from an array of disciplines and providers to cultivate a treatment plan that is both effective AND sustainable. At any point in the process, psychotherapy may serve as a nourishing complement to the work that is already provided, and to what may be offered/made available in the future.
Psychotherapy for IC recognizes that IC is not just a condition of the bladder and/or pelvic floor. It is a condition that interacts with and correlates to our social, psychological, and emotional worlds. The brain and the body and the soul are as interconnected as the ecosystem that surrounds us.
“Addressing the mental health component of IC doesn’t deny the physical condition: It acknowledges that chronic pain has an effect on the mind and on emotional health. Studies have shown that chronic pain can rewire the brain. Over time, it actually begins to expect painful sensations. Patients with chronic conditions, including IC, are at higher risk for depression, suicidal thoughts, and anxiety”
Psychotherapy can serve the purpose of providing:
Emotional Support: Living with chronic illness/pain can lead to immense hopelessness, despair, confusion, and loneliness. The emotional and physical toll of IC often begins well before receiving a diagnosis, and carrying the burden of managing symptoms can feel like a full-time job. Constantly having to ensure proactive and retroactive measures are in place to *hopefully* alleviate pain and discomfort is exhausting and isolating. It is the goal of psychotherapy, generally, to provide a sense of safety and compassion for people to show up as they are. It is a space to process the hard-to-carry-alone emotions like grief associated with lifestyle changes, and develop coping mechanisms to loosen the grip chronic illness may have on our lives. Here’s a look into specific therapeutic modalities that I use in session (and apply in my own life) to mobilize change in a gentler direction:
Acceptance and Commitment Therapy (ACT) can be beneficial for people who live with chronic conditions, such as IC. The core work of ACT involves discovering (or rediscovering) the values that are important to us while practicing aligning our behaviors more closely with these values. Living this way ushers us towards greater fulfillment, meaning, and purpose. The goal is not to live a life that is “perfectly aligned”— rather, the goal is to live a life where we try our best to uphold these values on a regular basis while carrying compassion for our ‘best’ looking different each day.
Cognitive Behavioral Therapy (CBT) is particularly effective in providing people with the knowledge and skills to manage overall stress, anxiety, and depression. The toll chronic conditions may take on us can (understandably!) lead to the development of deeply unhelpful patterns of thinking that often end up turning the volume up on the suffering we experience. The main goal here is to rewire our brain’s neural pathways through the practice of learning how to identify, challenge, and reframe these maladaptive patterns in our thoughts and behaviors. Through this process, we can cultivate more comprehensive and compassionate ways to respond to our daily lives.
Pain Reprocessing Therapy (PRT) is a relatively newer theraputic modality that many people (myself included!) are quite excited about. PRT pays attention to the ways in which chronic health conditions rewire our brains to be more susceptible to receiving/misinterpreting pain signals due to developing an overactive nervous system (fight-flight-freeze) and becoming accustomed to being on high alert (hypervigilance). PRT suggests that some pain is a learned response, and therefore we can re-train our brain to disrupt the fear-pain cycle that perpetuates the chronic discomfort we experience on a regular basis.
Pain Management: Psychotherapy can be an effective complement to medical interventions as you learn to apply relaxation and breathing techniques, mindfulness skills, and pain management strategies in tandem with additional treatment practices.
Supportive Environment: Group therapy or support groups can offer a sense of community and validation for people with chronic illness, especially those with conditions that make for sensitive and potentially stigmatizing conversations, like IC. There is no reason the IC community should feel as small as it does when it affects SO many people, as we know. In my research both personally and professionally, I have found it incredibly difficult to find support groups (peer led OR clinician led) and I have intentions to aid in changing that. In addition to providing individual/partnership support for people with IC, I am in the midst of developing a group therapy/support format by the new year (2025). In the interim, a 1-day workshop (11/3 @ 11-1) is currently available for enrollment. Please email me at trinity@wholementality.com for more information :)
As much as IC occupies *a lot* of my mental space (personally and professionally), it’s also a relatively niche condition to specialize in working with as a therapist, so I certainly expand my practice to the larger community of those navigating chronic illnesses more broadly. You’ll likely have noticed that much of what I’ve said about the intersection between IC and mental health—and the modalities referenced—may be relevant to the experiences of other chronic health conditions.
Battling uncertainty and isolation and blame and stigma and inadequate support and being forced to keep our eyes peeled toward the very real limitations embedded in our realities…it’s a tale as old as time for so many people in this community. And in addition to the need for advocacy of all chronic health conditions, is the need to bring attention to the pervasive threat of losing the people in our lives who endure this particular kind of suffering. While September is IC awareness month, it is also the month that brings awareness to suicide prevention.
“People who experience chronic pain conditions are reported to have a suicide rate that is 2-3x greater than the general population. And of those who have engaged in self-harm, 65% reported having a history of chronic pain.”
Sorting through the connective tissue between chronic illness/pain conditions and suicide requires a compassionate, integrated approach that manages to hold the brain, the body, and the soul together, all at once. It requires intentional tending to disparities in treatment and accessibility. It requires the use of anti-oppressive practices across disciplines in which people with chronic conditions may interact with (read: ALL disciplines). It requires fostering past-due conversations on these pieces of the conversation that have historically been left out, or poorly addressed.
To the people:
Who occupy bodies that ache, bodies that struggle to function properly, bodies that feel unfamiliar and foreign and broken.
Whose days are measured by pain-scales that can change on a moment-to-moment basis.
Who understand the cost of saying “yes,” and the cost of saying “no.”
Who know the weight of the word “burden” and the impossibility of “just ____” (try, do, don’t, etc).
Who “track” and “log” and have notebooks scattered around, full of symptoms, full of “triggers.” Trying to connect the dots in a sandstorm.
Who are trying to figure out who they are now, with this diagnosis.
Who are masters at concealing the pain in front of others, subduing the wince, adjusting themselves when they look the other way.
Who have “invisible” conditions, and know what a complicated thing that is.
Who have grown weary of explaining, re-explaining, and pleading as they justify their need for treatment. Just one more test, one more opinion, one more option available.
Who question whether they’re to blame for it all, whether hope feels too heavy to carry, whether they can still be seen as worthy, still having value.
This is my community. You are my people. And you, as a whole being, matter.
Suicide Prevention Resources:
https://www.mentalhealthfirstaid.org/2024/09/suicide-prevention-month-resource-guide/
https://www.samhsa.gov/newsroom/observances/suicide-prevention-month
https://www.nami.org/get-involved/awareness-events/suicide-prevention-month/
Sources:
Cheatle, M. D., Giordano, N. A., Themelis, K., & Tang, N. K. Y. (2023). Suicidal thoughts and behaviors in patients with chronic pain, with and without co-occurring opioid use disorder. Pain medicine (Malden, Mass.), 24(8), 941–948. https://doi.org/10.1093/pm/pnad043
Cozean, N. (2016). The interstitial cystitis solution: A holistic plan for healing painful symptoms, resolving bladder and pelvic floor dysfunction, and Taking back your life. Fair Winds Press.
Mayo Foundation for Medical Education and Research. (2021, September 29). Interstitial cystitis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357
