A Year in the Life of Parenting a Teen With OCD
Editor's Note
This story has been published with permission from the authorâs daughter.
If you struggle with obsessive-compulsive disorder (OCD), the following post could be potentially triggering. You can contact the Crisis Text Line by texting âSTARTâ to 741-741. To find help, visit the International OCD Foundationâs website.
2018 was the year obsessive-compulsive disorder (OCD) hijacked my daughterâs 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 daughterâs 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 OCDÂ â to name a few. Those experiencing them 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 person living with it, some are evidently surrounded by more shame, guilt, disgust and fear than others. My daughterâs 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 theyâd start and lie in bed in anticipation. For weeks after sheâd gotten better, Iâd 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. Iâve 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 canât 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 childâs 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 â my rock â 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 extensive testing proved what Iâd 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 OCDâs 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 didnât go right. It was the year Iâd 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 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 âregular Thursday.â
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 U.S. 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 couldnât help. Where I wanted to fall off the earth and disappear, so I wouldnât 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 didnât think either of us possessed.
And finally 2018 was the year where after eight long, tough months of worry and despair and heartbreak, my daughter was admitted to UCLAâs 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 didnât break us. Despite everything weâve 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 familyâs experience can become a resource for parents of other teenagers struggling with this condition. Specifically, the themes surrounded by intense guilt and shame. We have to talk about them. There have 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 those living with it feel isolated and hopeless.
I initially set out with the goal of logging my daughterâs 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 didnât. But the memories are forever etched in my mind. One day, Iâd 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 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 â wonderful and terrifying news all at once. Whatâs going to happen once weâre on our own? When we no longer have a team of highly experienced and qualified OCD specialists keeping us on course? A team of superheroes.
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 Iâm amazed at what she has accomplished. She still has work to do, but sheâs 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 whoâs 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 nine weeks of treatment she said “I hope I have a little girl â I think I would be a good mom”⌠I do too. In fact, I know she would.
You can go now, 2018. You wonât be missed.
This was originally published on Intrusive Thoughts
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