For the month of May, we are talking about mental health. OCD is often a co-occurring condition with autism, so our very own Lisa Watson has written a blog about her personal experiences with OCD to share some insights into how it can affect day-to-day life. Our hope is in sharing our journey and struggles, we would help shed the stigma around Mental Health. Thank you, Lisa!
I cannot remember a time whenmy mental health wasn’t impacted by OCD (Obsessive Compulsive Disorder). I was an only child, but my OCD felt like a bratty invisible sibling, following me aroundrelentlessly. The earliest experiences with OCD I can recall were in grade two. I remember sitting around the rainbow-colouredrug in class, I asked to use the washroom and was told to wait. I don’t know if that is when my OCD began as I have limited recall of my childhood, butit is the earliest OCD experience I remember. The teacher’s denial of my basic human right to go to the washroom caused a spiral of anxiety surrounding toileting. I was constantly worried about having to use the washroom, being denied and then having an accident.I asked to go to the washroom a lot during class and used it a lot during breaks, even when I didn’t have to go.So, that sums up my grade two experience and the beginning of my lifelong struggles with OCD.
There are different types of OCD (Obsessive Compulsive Disorder). They can include:
Cleaning and contamination
Symmetry and ordering
Checking and counting
Forbidden, harmful, or intrusive thoughts and impulses.
Fear of hurting self orloved ones
People often fit into several of these categories.I have always been a “checker” and a “germophobe.” Handwashing was a big part of my life growing up and still is. Iwash my hands at least 30 times per day even though I’m medicated for my OCD symptoms. My OCD peaked in my teen years. I remember constantly being worried about contamination and changing my clothes several times a day on top ofthe never–ending hand washing. I have remained a checker andhand washer,butI also experience taboo thoughts and impulses.I went through a phase when I was young where I believed I was swearing in my head and would be punished for my thoughts. There was also a period when I said “excuse me” constantly,believing if I didn’t say it bad things would happen. One of my most disturbing phases was after I had my child. I had obsessive thoughts that I maysleepwalk and do something terrible to him.
As I write about these things,I wonder…“what will people think?”I still care what people think of me, thankfully not nearly as much as when I was younger.My hopein writing this blog,which may seem odd to someone who doesn’t have OCD, isthat it will be a comfort and an “I get it” moment for someone with OCD.
I know my mother had OCD and was a “checker” as well. She would always double, triple and quadruple-check if the stove was turned off and the door was locked. I thinkher behaviourscaused my own OCD to flourish while I was growing up. My son is now the third-generation OCD sufferer in our family. Yes, I said sufferer because this disorder has negatively affected my life and now is impacting my son. For a long time, our doctors were hesitant to diagnose him with OCD because repetitive behaviour is often associated with autism. There are huge differences between my son’s OCD and my own,sometimes creating the perfect storm. He is a sensory seeker, he has the need to touch, smell, and lick things; completely opposite to my germophobia. He grew up with a mom that always had Purell and Wet Ones handy,long before Covid-19 made those products cool. Do I wonder if my own behaviours triggered my son’s OCD? Yes. I also wonder though if there is a genetic component to our OCD,that we are dealing with both nurture and nature.
I am fortunate that I have had great success curbing my OCD with medication. My mother came from a generation where mental health was not talked about; you didn’t take medication or seek counselling. Even with medication I still have OCD tendencies. I still wash my hands a lot and check that doors are locked, and the stove is off; however, I know it could be so much worse without medication. How do I knowmeds can help with OCD? In the beginning,I was prescribed medicationduring my experience with infertility and two miscarriages that resulted in depression. I know what it is like to not want to get out of bed in the morning and wouldn’t wish that feeling on anybody. A bonus to my prescribedmeds was that they helped my OCD, but when life was going well, and I wasn’t battling with depression I thought I didn’t need the little blue pills anymore and I went off the meds with no weaning. My mistake. Please remember: If you are considering stopping a medication, consult with your doctor.I was negligent and stopped with no weaning around Christmasone year. I thought I was coming down with the flu, I was shaky, having hot/cold flashesand nauseous. It took me a while to realize I was going through withdrawal. I also noticed that my OCD symptoms increased a lot over the few days that I was off the medication.
“…if you had a broken arm, we would cast it. Medication for depression/mental health is no different.”
After mynot-so-merry experience, I decidedanxiety/depression medication would be part of my healthcare plan for the rest of my life, and I am okay with that. I remember my doctor telling me when I first went on medication “Lisa, if you had a broken arm, we would cast it. Medication for depression/mental health is no different.” A friend once asked me why I needed medication for my OCD, and why I couldn’t just curb the symptoms on my own and be stronger. I don’t think she meant to sound insensitive, and this was before mental health was talked about as openly as it is now. My answer was “I just can’t.”
My OCD causes self-doubt, which leads to hand washing and checking. For example, if I’ve come in from being out in the community, I have sanitizedin my car, but my routine is to wash my hands when I come in the house (this was before COVID). When my boyfriend and I moved in together last year I remember asking him if he could do one thing—wash his hands when he came in from being outside. He looked at me a little strange and didn’t say much, but he got in the habit. Then COVID hit and now everyone (well, hopefully, the majority) washes their hands when they come home. Problem solved! Thanks for that, COVID. 😛
I’ll try to explain the vicious cycle of my hand washing. Prior to meds, I would wash my hands and then I would wonder, “did I actually wash my hands?” I know that sounds bizarre. I used to write down the time and reason I washed my hands. I’ve been known to check to make sure my hands are still damp as proof. What finally worked for me, in addition to my buddy Paxil, was to create a mental saying in my head when I wash my hands. Have I lost you yet? Stay with me… let’s say I went to the grocery store.While washing my handsI would recite something to myself about grocery shopping, perhaps include what I saw or bought there. Then after I’m done washing my hands and that self-doubt creeps up again (which it will) I can think back and say, “I know I washed my hands because I recited that in my head.” It truly does sound strange and unless you have experienced OCD it is very difficult to explainhow exhausting and debilitating OCD can be.
I tried CBT (Cognitive Behaviour Therapy) before I tried medication. It helped me to understand my OCD better, likethoughts about washing my hands.My anxiety would easeas soon as I was done washing, then build up again and I would have the desire to re-wash. Exposure therapy is something that is sometimes used to helpwith OCD, but I never tried it as it seemed scary to me.
My recommendationsfor friends and family that have a loved one with OCD:
What they are experiencing is real to them and scary.Don’t tell them to be stronger or that their concerns aren’t valid. Those concerns are very real to them, even if the possibility of something bad happening is very rare.
Be kind and empathetic.
Ask them if they would like to talk about their worries or OCD andjust listen.
Refer them to some of the wonderful mental health resources that are available.
The Mental Health Literacy Guide for Autism is meant for Autistic adults, family members, professionals, policy-makers & leaders. The goal of the guide is to provide knowledge about the factors that can impact Autistic mental health. It highlights how context & individual experiences play roles one’s mental health, and how societal acceptance and appreciation of autism is critical for the better support and well-being of Autistic adults.