Great article by Birgitte Hunt
2018 can leave now.
2018 was the year where OCD hijacked my daughter’s brain and took our family hostage.
It was the year where everything I thought I knew about OCD was challenged and I came to realize the stigma and misconception that surrounds it. OCD is the “neat disease” right? WRONG! Sure, for some people, compulsions do involve a need for order, but for many, OCD creates chaos not just in their heads but all 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.” It was the year where my family came face to face with perhaps the most horrendous one of all of them. Common types of OCD that no one ever talks about are Harm OCD, Sexual Orientation OCD (HOCD), Pedophile OCD (POCD), Scrupulosity OCD, Relationship OCD (ROCD) and “Pure O” OCD — just to name a few. Every sufferer will tell you that their theme is the worst, and that they wish they could trade it for any other theme. However, while I won’t argue that every OCD theme is living hell for the sufferer, some themes are evidently surrounded by more shame, guilt, disgust and fear than others. My daughter’s OCD convinced her she was a monster. Awful.
2018 was the year where 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, unable to end the torture. Thinking of this now feels like my heart is being ripped out of my chest all over again. I would be awoken by sobs or cries coming from her room so many mornings that I started waking before the crying would start, and just lie in bed and wait for it. Weeks would pass after she had gotten better where I would still be jolted awake thinking I heard her cry.
2018 was the year where my rational and logical brain had to stop trying to understand or explain OCD. I’ve always been one to want to understand or explain 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 almost to the effect of “How long is a rope?” Right.
2018 was the year of trying to navigate the mental health care system and insurance coverage/policies, 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 where I had to give up my job to take care of a completely debilitated child. Feeling tremendous guilt for focusing all of my attention on her and very little on her 13-year-old brother and her dad — my rock — who was tasked with carrying the financial burden of taking care of a family alone on top of the pain of watching his little girl suffer and sometimes reject him.
2018 was the year where extensive testing proved what I’d already suspected: that my daughter is extremely intelligent (IQ in the 98th percentile), 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 so much to meet deadlines because of the chaos in her head.
2018 was the year where I became OCD’s punching bag. The year where 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 every single day. It was the year where 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 where 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 one family member is as sick as my daughter was, it prevents you from doing anything and everything you used to do as a family.
It was the year where something so heart wrenching as hearing my child talk about wanting to die (though she did not have a plan and always assured me she wouldn’t ever kill herself because she knew how sad it would make me) just became “a Thursday.”
It was the year where she and I took a much anticipated trip to Denmark to visit family that just ended in heartbreak, gut-wrenching fear, escalated compulsions, and a trip back home to the US soon after our arrival.
2018 was the year where 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 just wanted to fall off the earth and disappear so I wouldn’t have to live another day of the pain I was feeling. Where I screamed at my child when I should have remained calm, but also where I ultimately discovered a strength within me and her that I didn’t think either of us possessed.
And finally 2018 was the year where — after eight long, tough months of worry and despair and heartbreak and feeling completely powerless as a parent — my daughter was finally admitted to UCLA’s OCD IOP for Children and Adolescents and her journey towards recovery began.
It has been a long, mentally draining 12-week journey (so far) of ERP (Exposure Response Prevention) therapy that has challenged all of us, sometimes past our breaking point, way beyond our comfort zone, 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 was doing her exposure treatments. My hope was that our family’s experience would become a resource for parents of teenagers with POCD to reference as they tackle this horrendous OCD theme which is surrounded by so much guilt and shame that no one ever talks about it. We have to talk about it. There have to be more articles written about the ugly side of OCD. The sexual themes. The themes concerning the fear of harming oneself or loved ones. Information about these dark themes is not easy to come by which makes you feel isolated and hopeless when initially faced with it.
My goal was to keep a log tracking my daughter’s progress and/or setbacks from start to finish. But it quickly became evident to me how emotionally and physically exhausting the process would be and I honestly never really had the energy to experience it all one more time in the process of writing it down. So I didn’t. But it’s forever edged in my memory and I wish it could’ve become a book. This will have to do for now. Maybe some day…
The list of emotions felt by everyone in our family this 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. Literally, a roller coaster ride of emotions, which we rode until we were sick to our stomachs and finally were let off. 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 in 12 short weeks. She still has work to do but she’s stronger and better equipped to handle what OCD throws at her in the future. 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 couple of weeks ago, after 9 weeks, she said “I hope I have a little girl — I think I would be a good mom”… It totally made me choke up.
You can go now, 2018.