By Sandy Robinson
A few weeks ago, I was an inpatient at my local hospital. I had a bowel obstruction and needed medical intervention to address it. This is one of many hospitalizations I’ve had. I carry around a list of past surgeries and complications (there are many) in my wallet in case I require urgent medical attention. I have memorized my health insurance card number the way many people memorize locker combinations. Every day, I follow a specific medical regimen of medications, diet, and moving my body enough to help me avoid bowel complications. But, even with my best efforts, I often need medical assistance and sometimes surgery to help me live a normal life. My medical conditions mean I have to be well-prepared, an excellent record taker, and my own advocate. I have to be flexible, rest when I can, and accept my pace may be slower than average.
I have been physically disabled since I was born very prematurely.
Before I can remember, my life was filled with medical appointments, physio appointments, surgeries, and hospital stays.
I can also trace my OCD back to early memories as a toddler/ kindergartener. For me, perfectionism OCD was my first and most persistent subtype of my disorder. The critical voice of OCD would alternate, telling me to work on something repeatedly or procrastinate and avoid it because it would not be good enough. OCD’s impact is clear to me now, yet, I wasn’t diagnosed with OCD until age 24.
The long duration between the onset of my symptoms and my OCD diagnosis and starting evidence-based treatment for OCD – Exposure and Response Therapy (ERP) – is backed up by research which states that, on average, patients wait up to 17 years for proper OCD treatment. Shortly after my OCD diagnosis, I was lucky enough to attend a residential treatment program for OCD, where I learned the basics of ERP and how to maintain OCD recovery. Coming out of my residential stay, I was naive, and I was under the impression that now that I had recovered from OCD, my need for ERP was behind me.
Yet, as I now know, maintaining OCD recovery takes sustained effort, living in the direction of my values, and challenging OCD daily with consistent exposure and response prevention. So, when I re-started ERP therapy in the summer of 2021, I was in an OCD relapse complicated by my co-morbid mental illnesses that also had deep tendrils in my life. For me, those mental comorbidities made me anxious, scared, sleepless, and hooked on the stories about the past and future that my mind replayed, magnified, and created.
The voice of OCD was loud, but I was also actually engaging in the things it said. The more I tried to engage in ERP, the more recovery felt impossible. “If I can barely brush my teeth”, I thought to myself, “how can I actually find the will to fight against OCD? How can I care about being an active participant in my own life? Is it even worth it?” However, a year and a half into my second ERP journey, I am in sustained OCD recovery. A few things made this recovery more robust:
- I received thorough psychoeducation about OCD and ERP.
- I found community by attending my local OCD GOAL Support Group, meeting amazing OCD advocates on social media, and attending virtual IOCDF conferences.
- I learned to deeply engage with my values through Acceptance and Commitment Therapy alongside ERP.
- I was empowered to think of OCD recovery as an ERP lifestyle and a lifelong journey of self-discovery.
- I learned about the power of self-compassion in OCD treatment and recovery.
- I finally understood that although my other health challenges made my ERP progress slower, recovery was still possible.
- And lastly, I learned that I as a person am deeply special. My OCD is not (1.)
If you have a disability or chronic illness alongside OCD, recovery is still very much possible. If you feel disabled by a prolonged battle with OCD, recovery is still possible. ERP may need to be adapted a little to adjust to your physical or mental differences, but a trained OCD therapist can help you to do that. The IOCDF Resource Directory is a great place to look for therapists serving your area, support groups and OCD clinics. If you believe that you cannot recover because of complicating factors, here was how I worked around one of mine: During my recent ERP treatment, I was deeply and persistently depressed.
So, finding hope for my future or motivation to engage with ERP was difficult. For that, a combination of things worked, including adjusting medications, learning (and practicing) self-compassion, Behavioural Activation, and setting small goals, which could be adjusted with my fluctuating physical energy/ medical considerations.
Getting to a place of recovery took a long time, and I continue to work to maintain my recovery everyday. With my disability and chronic illness, despite my best efforts, some days (or weeks or months) will be extra challenging. However, I do things to challenge OCD whenever or wherever I can. OCD recovery with chronic illness/ disability takes extra planning, creativity, flexibility and problem-solving. The skills that made me a knowledgeable self-advocate for my access or medical needs eventually helped me find a sustained mental health recovery.
(1) Rev. Katie O’Dunne, IOCDF Lead Avocate, introduced me to this concept through social media posts such as this.
Bio - Sandy Robinson is a proudly disabled woman. She has an MA and English Literature and is pursuing an MLIS degree to become a librarian. She is IOCDF Grassroots Advocate. She lives in Canada.