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Recovery from OCD when help isn’t accessible in Ontario.

After developing Obsessive Compulsive Disorder, this mental health service user finds herself increasingly house-bound and struggling to find help from doctors and therapists. Unable to access specialized care in Ontario, her family pays for her to travel to the US for private care and then pays for private therapy upon return. Service restrictions and lack of awareness amongst healthcare professionals create more challenges but she has overcome them and is now working, volunteering, and living her life again.

Four years ago I had become very obsessive-compulsive. I was horribly ashamed and embarrassed, but after 2 years of my symptoms worsening, I decided to see a GP, but not having a family doctor at the time, I went to see a doctor at a walk-in clinic who I had seen before and thought highly of. My intrusive thoughts and rituals took up about 2hrs/day and I had begun avoiding many of my usual activities based on my irrational fears. The doctor told me to get some blood work done and he’d refer me to a psychiatrist. Two-days later I had talked myself out of getting the blood work done, intrusive thoughts had terrified me from having my blood drawn.

Months went by and I had not heard back from that doctor – I never did receive a follow-up call with a referral to a psychiatrist. Eventually I did start going to talk therapy, but not with a Cognitive Behavioural Therapy (CBT) specialist as I had no idea that there were different types of talk therapy. Unfortunately, I was massively triggered following one of these sessions and my symptoms intensified, so I stopped going. The therapist had recommended that I return to my family doctor in order to get a prescription to reduce my anxiety. I decided instead to do more research into the meds that are commonly prescribed to people with OCD and I got even more freaked out when I saw that side-effects could actually increase anxiety. So I did nothing.

A year after my initial visit to the walk-in clinic, I had quit my job, dropped out of a Masters program, and was hiding out in my parents’ house coming up with excuses for my very odd behaviours. I decided I had no other choice but to see a doctor and try meds even if they could make me worse. The doctor I saw immediately put me on meds and told me to find a psychologist and to not bother finding a psychiatrist as I needed therapy – this was poor info as I later discovered. But I did find a very knowledgeable psychologist who after many interviews was able to initially help me through CBT and Exposure Response Prevention (ERP) therapy. However, two months after our initial meet, I had a major set back and became very reclusive, mostly confined to a bed in my parents house for 6 months, with the exception of 2 visits to my doctor to get higher doses of meds prescribed. At this point my rituals were taking up at least 6 hours/day. My family was scared by how quickly my quality of life deteriorated and I felt worse knowing that in addition to having to care for me, I was causing a lot of problems (arguments) among them.

After 6 months of this, I decided it was time to act on a piece of info that my psychologist had told me at our initial meeting – that although there were no facilities in Canada to treat people with severe OCD, there were 2 mental hospitals in the US that provide inpatient care for them, and that this treatment was covered by OHIP. To make a long story short, in my last visit to my doctor (i.e. the second time I left the house in 6 months), I had brought the correct OHIP form to his office and he agreed the treatment I was seeking would be the best option. However, he forgot about my form, and the piece of research he needed to do was never done (i.e. to show that this level of treatment is not available in Canada, which would have been easy enough to prove with calls to CAMH and Sunnybrook Hospital) as I would later find out. I was not able to call him as the clinic would not pass along messages to doctors from patients, and he did not have a direct line. I couldn’t just drop by his clinic, I was too debilitated for that.

After two months of waiting for my doctor to get back to me, my family decided to pay for my treatment so that I could get the help I needed. And I did – three months later, I was back in Toronto, able to go out on a regular basis, with my rituals taking up less than an hour/day. However, I was not able to get into OHIP funded recovery program, which is CRUCIAL post 24hr care, so I once again got saved by my family who paid for me to go back to my psychologist for 3 sessions/week for the first several months.

I eventually was able to get into a once/week 2 hour group OCD program at CAMH, but was told I had to either give up my private sessions or give up the group session. Since the group session would not have given me the support level I needed at the time, I had to give it up, which was depressing as it was my only contact with people in Toronto who had OCD and their support had helped considerably for the 2 group sessions I was able to attend prior to getting the ultimatum. On a side note, there was a 1.5 year wait list to get into a similar program at Sunnybrook. This is completely unacceptable, as untreated, mental illness tends to escalate, and it can escalate quite considerably over 1.5 years. It could literally be the difference between life and death for some.

It’s been 2 years since I entered the hospital in the US, and I’m able to work, volunteer, have a life, while also attending therapy once a week, self-funded. I’m still having a lot of problems finding a family doctor who knows about dealing with people who have OCD. I’ve seen 5 doctors in the past year – not one knew that there were: no hospitals in Canada that provided intensive treatment for people with OCD; that there are hospitals in the US, that are covered by OHIP that treat people with severe OCD. I wish that all doctors in Ontario knew that, because I know I’m not the only one in this province who has gone through or will go through hell because of OCD, not knowing that treatment is available. I don’t know if psychiatrists in Ontario know this, but I do know that the wait list to see a psychiatrist is also incredibly long. Psychologists are not covered by OHIP even though they might be a vital treatment provider and, in my case, have been and continue to be.

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