To end the year, we are sharing stories of a few members to give you a glimpse into the lives of people using our platform to better their health. The patient voice is at the heart of everything that we do. By showcasing to others how valuable each community is to our members, we aim to further empower others to share their stories too.
Today is the final post, where we hear from a member of the My OCD community, talking life with OCD.
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Living with OCD is like having an unpredictable, overbearing yet well-meaning little monster living inside your head that is constantly trying to protect you from any perceived threat. Even when the threat is completely irrational. In fact, I often call my OCD my OC Monster and imagine it to be a little monster sitting on my shoulder giving me horrible, dark and scary intrusive thoughts which compel me to carry out compulsions to relieve the distress and anxiety the terrible thoughts cause.
While my main OCD theme is contamination, I also have obsessions and compulsions that revolve heavily around moral scrupulosity, symmetry, numbers and just right themes and, because OCD is so unpredictable, it will change themes or even combine them. This means that anything I encounter throughout the day has the potential to become a trigger. Old triggers can also come back and new themes will pop up. It can often feel like playing a game of “whack-a-mole”. The ever-changing nature of OCD combined with the fact that it will latch itself to everything that you value the most can make it feel overwhelming and impossible to manage without the right treatment and a lot of hard work. I rely on the tools I’ve learned in therapy with my OCD specialist to get me through each and every day.
Mornings with OC Monster are the absolute hardest. Waking up can feel a bit like playing roulette. Will the monster be quiet or will it be loud? Will I have a “good OCD day” with relatively few sticky thoughts and rituals or will I find myself stuck in a spiral of ruminations and compulsions over something random?
Upon awakening, I tend to feel compelled to check and see how bad my intrusive thoughts are. I think it’s a way to try to determine what the rest of my day will look like. Unfortunately, it’s not a good predictor and is likely a compulsion. After assessing how loud OC Monster is, I hit the ground running taking care of my 3 year old. Parenting is a beautiful, challenging and demanding journey. OCD multiplies that challenge exponentially.
Our first stop in the morning is always the kitchen. I love a cup of coffee while my son does his puzzles. Once I’ve got my caffeine, I make breakfast. This is where I truly know how loud my OCD is. As my obsessions revolve heavily around contamination themes, my biggest fears and largest triggers lie in touching something contaminated and subsequently becoming or making my family fatally ill. Having these thoughts can cause me so much distress that I feel driven to compulsively wash my hands, clean excessively and to create safe zones within my home. In truly bad moments I can become agoraphobic because I feel that everything outside of my house is contaminated and unsafe. The ongoing pandemic has only amplified these fears. The kitchen is full of contamination triggers. There are so many items that have come from outside the home that I must touch thereby contaminating myself. On a good day, I successfully practice my ritual prevention. This means I resist compulsions and work to accept my intrusive thoughts without judgement or acting on them. Ritual prevention and acceptance make it possible for me to make breakfast just like a person without OCD. On a bad day, I will wash my hands after finishing using every single item I touch that is deemed contaminated. This takes extra time, effort and mental energy as I have to keep track of everything I touched so I can decontaminate the “right” way.
All of these fears and false alarms present quite a challenge when you’re responsible for caring for a tiny human 24/7. The world feels unsafe and full of triggers from sunrise to sundown. There is often a push and pull in my mind where a fear or intrusive thought will pop up and I must check in with myself to determine if it’s a valid concern or a false alarm. My favorite way to do this is to pause when I’m feeling panicked or an urgent need to do something and slow down. Once I’ve slowed down, I’m better able to determine if the urgency or panic is a false alarm or not.
Once we’ve finished breakfast, I like to get us outdoors. I love being outside in the fresh air and nature playing with my son. There is something very freeing and joyful about it. Of course, OCD isn’t far behind. My intrusive thoughts are still there telling me that everything outside of the house is potentially contaminated with something that will make us fatally ill. As irrational as this may seem, my fears can feel very real. Most days, we get outside anyway. The intrusive thoughts are present, but directing my attention toward one of my biggest values, my son, helps me accept the thoughts without ritualizing. On a bad OCD day I will find alternate activities for us to do inside because being outside feels too scary. I’m thankful that ,with a lot of hard work and therapy, my good days far outnumber my bad ones.
After we do our afternoon activities, I bring my son in for a bath and lunch. Bathtime can serve as a nice respite from the contamination thoughts, but preparing lunch in the kitchen brings them right back. The rest of the day is a marathon of cleaning up, playing games inside and then preparing, serving and cleaning up after dinner so that we can head straight into bedtime. The latter half of the day is when I’m most vulnerable to intrusive thoughts because of the busyness. OCD can become tougher to manage when you’re tired, stressed and distracted as parents tend to be at the end of the day. It’s easier to forget my ritual prevention and simply give into my compulsions or to get caught up in a cycle of rumination without realizing it. It’s during these vulnerable moments that I lean heavily into mindful acceptance and self-compassion. I do my best to allow my intrusive thoughts to come and go when I’m able and to treat myself with gentle kindness. Offering myself the same compassion I would offer a friend or loved one navigating OCD and parenting helps me keep from falling into self-criticism and frustration at the end of the day. Life with OCD can be exhausting, but having my son and husband, a great support network, an amazing therapy team and the incredibly warm OCD community make living with my OC Monster so much easier.
What does your community mean to you?
This community has come to feel like home to me. Living with OCD can be an unpredictable day-to-day challenge. Some days, you feel great and your symptoms are barely there and other days your mind is full of sticky thoughts and you feel driven to do compulsions non-stop.
Having a welcoming, supportive and friendly place to go where everyone understands what you’re going through can be truly invaluable. Evidence-based practices such as Exposure Response Prevention are absolutely the gold standard for treating OCD and teaching patients to manage their symptoms. However, I believe peer support is an important part of recovery as well. Having OCD can feel isolating and shameful. I used to think I must be the only person in the world who suffered with intrusive thoughts and compulsions the way I did. I was ashamed of how my mind worked and how I couldn’t just power through my fears the way I felt I should. Therapy helped with my symptoms, but not the shame and isolation. Peer support was what truly helped me realizeI wasn’t alone and that I didn’t need to be ashamed of having OCD. This community helps others connect, reduces stigma and shame and provides a safe place for those seeking support. It’s a beautiful thing to see and be a part of.
What do you do to de-stress?
De-stressing is so important when you have OCD. It’s easy to get worked up over false alarms and get caught in a cycle of obsessions and compulsions. My favorite way to de-stress is exercise. I enjoy running, walking, roller skating and weight lifting. I also enjoy journaling. I keep a bullet journal so that I have everything I need in one place.
When I’m not exercising I can be found painting or reading.
It can be hard to find the time to de-stress as a parent, but I find it’s better for my OCD and my parenting to make myself a priority.
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Consent was given to share this story.
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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions and wellbeing needs, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email communications@healthunlocked.com to learn more.
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