A Year in the Life of a Parent and her Teen with OCD

2018 was the year OCD hijacked my daughter’s brain and took our family hostage.

It was the year everything I thought I knew about OCD was challenged. The year I came to understand the stigma and misconception that surrounds this condition. OCD is the neat disease, right? Sure, for some people compulsions involve a need for order, but for many, OCD creates chaos that expands far outside their heads and into the world around them. My daughter’s room was perpetually messy, she was highly unorganized, extremely forgetful, and had trouble focusing. There was nothing neat about OCD in her case. It was ugly and chaotic all around.

Until 2018, I was blissfully unaware that OCD has ‘themes’. Common types of OCD are Harm OCD, Sexual Orientation OCD, Pedophile OCD, Scrupulosity OCD and Relationship OCD – to name a few. Every sufferer will tell you that their theme is the worst, and that they wish they could trade it for another. However, while every OCD theme is living hell for the sufferer, some are evidently surrounded by more shame, guilt, disgust and fear than others. My daughter’s OCD convinced her she was a monster.

2018 was the year I had to witness my child in unbearable mental and physical pain, where I had to listen to her talk about the disturbing images in her brain, the horrific nightmares, the inability to end the torture. Thinking of this now feels as if my heart is being ripped out of my chest all over again. I was awoken by sobs or cries coming from her room so many mornings, that I started waking before they’d start and lie in bed in anticipation. For weeks after she’d gotten better, I’d still be jolted awake by the imagined sounds of her weeping.

2018 was the year my rational and logical brain had to stop trying to understand or explain OCD. I’ve always been one to approach things logically, but OCD pulls you into a rabbit hole where nothing makes sense. It has no logic. It lies. It asks questions that can’t be answered.

2018 was the year of trying to navigate the mental health care system and insurance policies. The year of doors being slammed in our face, of having to entrust my precious child’s brain to professionals who sometimes had conflicting opinions on what the best and most effective treatment would be.

It was the year of trial and error as far as medication was concerned, resulting in even more heartache and despair, until we got it right. This process took about 10 months.

It was the year I had to give up my job to take care of a completely debilitated child. And feel tremendous guilt for focusing little attention on her brother and dad – my rock – who was tasked with carrying the financial burden of taking care of our family, in addition to watching his little girl suffer and sometimes reject him.

2018 was the year that extensive testing proved what I’d already suspected: that my daughter is extremely intelligent (IQ in the 98th percentile). It was the year of trying to figure out how to support her at school, and of navigating 504 and IEP plans. It was the year of endless meetings with school counselors and psychologists and vice principals, the year of pleading with teachers to support my child who wanted so badly to do well and please everyone, but who struggled to meet deadlines because of the chaos in her head.

2018 was the year I became OCD’s punching bag. The year I was cussed and screamed at, had things thrown at me, was called every name in the book and was blamed for everything that didn’t go right. It was the year I’d lie and cheat and tell my daughter whatever I thought she needed to hear to feel better and let me be. Where I got sucked into her compulsions and inadvertently became part of her disorder.

It was the year OCD nearly destroyed my family. The pressure and frustration and hurt kept building and building, it isolated us and made us turn on each other. When a family member is as sick as my daughter was, it prevents you from doing all the things you used to love.

It was the year that something as heart wrenching as hearing my child talk about wanting to die (though she assured me she would never kill herself because she knew what it would do to me)  became a “regular Thursday.”

It was the year she and I took a much anticipated trip to Denmark to visit family, that instead ended in heartbreak, gut wrenching fear, escalated compulsions and a trip back home to the US soon after our arrival.

2018 was the year I was tested mentally, emotionally and physically like no parent should ever be tested. A year that felt like death by a thousand paper cuts. Where I sometimes just wanted to give up and send her away. Where I cried nearly every day. Where I resented my child for having a disorder she couldn’t help. Where I wanted to fall off the earth and disappear so I wouldn’t have to live another day in the pain I was feeling. Where I screamed at my child when I should have remained calm. But also, discovered a strength within me and her that I didn’t think either of us possessed.

And finally 2018 was the year where after 8 long, tough months of worry and despair and heartbreak, my daughter was admitted to UCLA’s Pediatric OCD Intensive Outpatient Program (IOP) and her journey towards recovery began.

It has been a long, mentally draining 12 week journey (so far) of Exposure Response Prevention therapy that has challenged all of us, sometimes past our breaking point. But at the same time, empowered us to keep going. OCD didn’t break us. Despite everything we’ve been through, we stayed the course and persevered.

I wrote this in the waiting room while my daughter underwent treatment. My hope is that our family’s experience can become a resource for parents of other teenagers suffering through this condition. Specifically, the themes surrounded by intense guilt and shame. We have to talk about them. There has to be more articles about the ugliness of OCD. The sexual themes. The themes about harming oneself or loved ones. The fear of pedophilia. Information about these manifestations is not easy to come by, which makes sufferers feel isolated and hopeless.

I initially set out with the goal of logging my daughter’s progress and setbacks from start to finish. However, it quickly became evident to me how emotionally and physically exhausting this process would be. I found myself lacking the energy to write everything down and relive what had just happened. So I didn’t. But the memories are forever edged in my mind. One day, I’d like to turn them into a book. For now, this will have to do.

The list of emotions felt by our family over the past year is extensive: hope, fear, despair, pride, anxiety, resentment, excitement, relief, grief, stress, loneliness, exhaustion, joy, frustration, love, pain, desperation, sadness, unity… it goes on. It was a roller coaster of emotions, one that we rode until we were sick to our stomachs. Ups and downs. Ups and downs.

After 12 weeks of intensive treatment, we are looking at discharge from UCLA in the not so distant future. Another case of mixed emotions — wonderful and terrifying news all at once. What’s going to happen once we’re ‘on our own’? When we no longer have a team of highly experienced and qualified OCD specialists keeping us on course? A team of super heroes.

My daughter does not have any physical compulsions anymore. I compiled a list of her compulsions in preparation for her intake evaluation 13 weeks ago and when I look at it now I’m amazed at what she has accomplished. She still has work to do but she’s stronger and better equipped to handle what OCD throws her way. So am I. Her recovery has not been linear. Two steps forward, then a step back. A dance with the devil who’s refusing to let go.

The first week in treatment the therapist my daughter was working with asked her if she wanted children of her own. It crushed my heart when she looked down at her feet and quietly said ‘no’. A few weeks ago after 9 weeks of treatment she said ‘I hope I have a little girl – I think I would be a good mom’… I do too. In fact, I know she would.

You can go now, 2018. You won’t be missed.