You Make Me Sick: The Dehumanizing Trauma of Disability Benefits Processes

A close up of a yellow canary bird surrounded by white-petaled flowers with green leaves and gray-brown branches with green shrubbery in the background.

CONTENT NOTE: in-depth discussion of trauma, including medical ableism, as well as brief mentions of childhood neglect and abuse, antisemitism, physical violence, and war/conflict

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One Sunday in June, I spent 90 minutes describing to my psychologist what I considered to be the most traumatic event of my life. I relayed how, even though it happened when I was five, it has continued to impact my day-to-day existence, even at the age of 53.

 

This was for the clinician-administered post-traumatic stress disorder (PTSD) scale for the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), or caps-5 for short. Created by the U.S. Department of Veteran Affairs, it’s considered the gold standard diagnostic tool for assessing PTSD. My psychologist was one of 27 practitioners I’ve contacted over the past six months while collecting evidence to prove that my multiple diagnoses are debilitating enough to merit disability benefits. My diagnoses total 10 different recognized conditions; how they affect me (or not) depends on the day.

 

As much as possible, I continue proactively seeking to regain my ability to function both emotionally and physically. I work regularly and at great emotional and financial cost with a therapist, nutritionist, health coach, and multiple doctors. I also participate in self-help programs and have developed routines that focus on what’s commonly called the mind-body spectrum. But no matter how sick you were to start, applying for disability benefits can make you feel sicker.

 

In my case, the process robs me of precious energy and emotional equilibrium that I would rather apply to healing and functioning. It constantly forces me to assess how poorly I feel and how unable I am to cope. I encounter imposter syndrome from multiple angles. As someone suffering from CPTSD, social interactions (especially with authority figures like doctors) are retraumatizing. The disability benefits application process requires me to constantly encounter old triggers, brave new ones, and plot forth regardless to get what I need.

 

In my experience, certain kinds of specialists are more likely to treat me as a psychosomatic hypochondriac than others. Recently, a gastroenterologist went so far as to say I should consult my husband to learn how to relax, as a form of treatment for my stomach pain. For the record, I learned shortly after that appointment that my IBS, which had been undiagnosed for months, was due to multiple gut infections. It was just one of several disrespectful—and harmful—experiences I’ve endured while seeking care for chronic illness and mental health conditions.

 

Having long experienced such gaslighting from medical practitioners, I have adopted specific coping mechanisms. My default state with authority figures is what’s considered ‘fawning’ in trauma terminology. This means that I respond to a threat or conflict by being agreeable, regardless of how I feel. That makes it easier for me to handle my doctors, even when I disagree with them or feel that they are being dismissive. First, I anticipate potential responses, thinking very carefully about what to say and how to say it. I strategize about how to act agreeably without compromising my care. I only interrupt their script if it’s relevant to the condition at hand. I only ask about alternative treatments if it’s necessary to avoid contraindications.

 

The entire process, however, takes a toll. Because of this intricate interaction of emotional labor and medical trauma brought on by a lifetime of dealing with this, doctor’s appointments set me back emotionally. I often need an emergency therapist appointment after one. Many of my conditions, like trauma, chronic pain, and fatigue, relate to the autonomic nervous system, which “regulates involuntary physiologic processes including heart rate, blood pressure, respiration, digestion, and sexual arousal.” I’ve found somatically-focused psychotherapy aimed at treating trauma and stress-related disorders to be an invaluable coping tool to manage stress, including that related to such ableism and the medical industrial complex.

 

Somatic tools like meditation to calm my nervous system, expressive writing to identify and release pent up emotions, and movement aimed at integrating my thoughts with my physicality are fundamental coping mechanisms for me. I had intended to use these tools to transcend the stress caused by the disability application process, like my experience with the psychologist. After this caps-5 assessment, it has been especially hard to stay emotionally regulated, on an even keel.

 

Applying for disability is an exercise in cognitive dissonance and dissociation, not only in how I see my story but also in terms of how I encounter the world. There is a huge gap between how I understand my conditions and how the mainstream medical system does, and this augments my tendency to feel disconnected and lonely—like an ugly duckling without the hope of ever becoming a swan. The caps-5 experience has shown me just how complicated it can be.

 

As a part of that assessment—which is designed for PTSD, not CPTSD—I filled out an advance survey called a ‘life events checklist.’ I ticked off nine out of 17 traumatic life events. Examples of traumas in the list included things like floods, war, assault, and abuse. I then had to select the single most impactful one. Even though I’ve had Serbian tank guns pointed at me, had a knife held to my throat by an adolescent relative when I was young, and experienced childhood sexual abuse, it was my five-year-old friend’s Christian youth group meeting that surpassed them all as the most traumatic event of my life.

 

What destabilized me was speaking at length about how, over the last month of my life, that event has continued to make me feel shitty. I was able to do it honestly enough, but not without reopening profound wounds. It forced me to take the entire breadth of discrimination and trauma that I’ve ever endured as a woman, as a Jew, as someone raised working class, and as a perimenopausal, unemployed person, and condense it all down to the impact of one instance.

 

This hooks into a cascade of triggers for me that relate to an even bigger, widespread problem among people with CPTSD. Finding the right therapist, one who recognizes and treats Complex PTSD as a primary condition, has taken me decades. I’ve learned that a big part of my CPTSD is my projection of feelings of neglect and invisibility onto current day situations. Some years after that initial childhood trauma, my first bra was a hand-me-down from that same Christian neighbor; she was the only one who bothered to notice I needed it. Similarly, the caps-5 experience has left me feeling less than and ignored as I fight to receive a painful second-hand diagnosis that doesn’t even fit.

 

People often complain about how slow the disability application process is; indeed, given how expensive disability can be, it’s easy to see why they do so. I’m tempted to fawn my way out of it by saying that a hidden benefit is that it allows me to titrate the pain of applying and stay focused on healing. But the truth is that this extended process is depleting my funds and my soul. Every practitioner I must chase is busy and hates paperwork. Every interaction is a request to prove how bad I am, while questioning whether I’m justified in asking for help yet again. Every contact is a reminder of what worked, what didn’t, and why. There are paperwork fees plus translation costs for my medical files that are in Spanish.

 

This cycle of invisible retraumatization is a test of resilience that no one should bear. Yet, as a trauma sufferer as well as someone who deals with other chronic illnesses, I know disabled people are canaries in society’s coal mine—we suffocate first. It’s true we’re carrying an impossible load; it’s equally true that society, as it’s currently organized, is not functioning humanely. If it were, would I even be here in the first place?

 

 

 

Sybil Sanchez Kessler (she/her) continues her path as a recuperating Jewish communal professional and middle-aged immigrant seeking her place in life. A health coach and writer, she blogs about wellness on Medium and at sybilsanchez.com. Sybil lives in Mexico City with her partner, daughter, and two dogs.

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