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Searching for Something That’s Certain to Blame Will Lead to a River of Stigma and Shame

If you are feeling lost and alone with chronic pain you are in good company. I have suffered half of my life with intermittent, debilitating pain. Interstitial Cystitis (IC) has had a wide-reaching effect on all aspects of my life. The long journey from anger and blame has led me to a place of knowledge and compassion. I understand the depths of sorrow that these conditions can cause. I have experienced narcotic dependence, horrible bouts of insomnia, agonizing pain, and at my lowest point, asking my family for forgiveness if I were to end my life. The sheer isolation of suffering with a poorly understood chronic illness finally hit me after my third CAT scan when my physician told me “you are literally full of it.”
In a society that values what can be easily defined, there are many states of suffering that get marginalized. Examples include depression, OCD, back pain, chronic fatigue, fibromyalgia, and migraines. We are a unique group, looking fine on the outside, while internally enduring intense pain. Due to the ambiguous nature of these conditions, individuals are often met with doubt and frustration that leads to secondary suffering: stigma and guilt.
Following years of consulting countless specialists, it seemed that the medical community was not taking my pain seriously. At that time, IC was not consistently regarded as a “true” medical illness. Since IC can be present without the existence of clear tissue damage, it is considered an “invisible illness.” Eventually, my physician suggested that my pain was not based on a “true” medical illness, therefore “must be in [my] head.” I was referred to a psychiatrist, which left me feeling cast-out. It took years of researching and soul-searching to find comfort.
I, like most others, viewed my illness, within a dualistic and categorical framework. I adopted an “either/or” mentality to feel a sense of control. In fact, the infinitely complex interaction of the mind and body is more properly referred to as “mindbody.” Something as simple as changing a word can have a life altering effect on one’s perception of reality. Seeing the mindbody as one, allows for a “both/and” mentality. Black and white thinking distorts one’s perception of reality. Yet, by simply changing a word, we create a new language for pain.
Noting a correlation between increased stress and a painful episode, I knew that treatment necessitated an integrated approach. Gradually, I educated myself about a more systemic view, taking into account the interplay among the biological, psychological, and social aspects of pain, referred to as the biopsychosocial model. In studying the subjective experience of women living with IC for my doctoral dissertation, I was convinced that I would uncover a fault in the medical system. To my surprise, I discovered that blame was useless and that personal responsibility was the path to freedom. I learned effective ways to modulate pain using specific methods of controlling awareness and perception of reality, such as mindfulness training. Using these skills, I reduced my symptoms by 80%!
In therapy, I subscribe to a humanistic model by serving as a “co-pilot” in each patient’s treatment. This provides the self-efficacy necessary to overcome many of the struggles inherent in living with chronic pain. Both psychological and physiological factors must be explored. It is vital for therapists to communicate with doctors, family members, and other support systems. Since the disabling pain renders many sufferers housebound, therapists must be able to provide home visits or telehealth sessions. Tools such as psychoeducation, cognitive-behavior therapy (CBT), and mindfulness-based stress reduction (MBSR) are essential to engender power, acceptance, understanding, spirituality, and hope.
A change in perspective is a change in your subjective reality. For me, clarity came in a slow, uphill battle as well as in bursts of “ah-ha” moments. One of my favorite realizations was a teaching that ‘we learn more from our enemies than our friends’. I was viewing IC as a thing to “get rid of” as opposed to a part of myself from which to learn. Much of my healing was to accept and look into my pain with a compassionate attitude instead of trying to escape. This process lowered my frustration and anxiety, as I was left with a pure moment of peace.
By accepting discomfort, I was able to look at it in a calm and welcoming way. I truly realized that what we resist… persists. The application of this insight took years to internalize. As I look back at my journey, I have learned that by accepting, rather than blaming, one can rise above the river of stigma and shame. I am one story, and I encourage you to follow your dreams and share yours…