Experiencing any type of mental health condition can have devastating impacts on you and those around you. It can change your worldview, how you function, and how you move about the world. The fact that these illnesses primarily affect the mind means their very existence isn’t always obvious to others. When the people around us—even those we are closest to—are oblivious to the level of our suffering, it can add a whole new layer to the pain that we feel. That pain can be labeled as grief. We are grieving the loss of a life we imagined, the dreams we had, and the things we missed out on.
I know that for me, personally, that loss is something that I can rarely, if ever, fully share. It can be hard to find the right words and the depth of the experience can be difficult to explain. The very real fear of being judged—the shame, the guilt and the worry that others will see my condition as attention-seeking—can prevent me and many others from talking about the impact that persistent and serious mental illness has on our lives.
When we think of an experience, we often think of life events, such as a wedding or going away to college. Of course, these are important experiences, but there are also much smaller and just as meaningful experiences that people can miss out on due to obsessive-compulsive disorder (OCD).
For me, OCD has been such a huge part of my life since I was very little that it became intertwined with who I was. My identity became confused with my condition. It took years to sort through it all and still, even today, it can be hard to separate the two. I often say that I feel like OCD stole my childhood. As I watch my own children grow into young adults, I have spent a great deal of time reflecting on my own development.
When I was little, OCD caused me to miss out on simple things, like slumber parties and school field trips. I didn’t want to be away from home and be unable to ask for reassurance or perform compulsions. It became easier to just skip out on things that I really wanted to do but felt unable to. I was constantly overthinking every social interaction. I always felt that I wasn’t good enough or that I was somehow doing something wrong. I imagined that everyone thought the very worst of me. I shrunk more and more into my shell. Missing out on making friends and memories was just a piece of it.
As I grew older, the losses became more and more prominent. I never graduated from my high school class. I never went to prom. I missed out on what I can only presume were normal adolescent experiences. My OCD symptoms made me constantly believe that everyone hated me and was thinking terrible things about me. I couldn’t do or say anything right. This was compounded by frequently switching schools. It was this awful cycle of me complaining that everyone hated me and I was miserable, switching schools, and then repeating the same pattern. I went to about 10 different schools during middle and high school. This left me feeling separated from the traditional education experience. It also has left me with a profound sense of guilt. I think about how difficult this must have been for my family. They were worried about me, they knew I struggled and probably felt powerless. This was a time before OCD was really spoken about. I dropped out of high school (three different times) and finally returned to a partial home-school program. I remember being at the graduation party of my then-boyfriend (now husband). I slipped away to my car to cry. I was so sad. I didn’t even recognize the depths of that sadness at the time. But I felt that loss, and felt it again at each of my children’s graduations (I have one more left to go). Even all of these years later I still feel the heartache at these missed opportunities.
Just the other day, my children were looking through their yearbooks and we were talking about high school experiences. My children commented that mine sounded sad. Again I was raw with emotions, and felt guilty that they felt bad for me. I don’t have a single yearbook. Though I’m grateful that they have these experiences, I don’t have the same sorts of good memories to share about the things that they talk about.
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I didn’t attend college until after I had married and started my family. All of this, I’m sure, was connected to my OCD. Even my college years were not what I consider traditional. I never lived on campus, in a dorm, or even had college roommates. I didn’t even walk at graduation for my bachelor’s degree, believing it was not that important.
On my wedding day, I was in the throes of some of the worst OCD years of my life. I remember distinctly having been all ready, hair and makeup done, only to have intrusive thoughts that involved emotional contamination. Something to do with the conditioner I had used on my hair that morning. Just before I was set to walk down the aisle I rushed home and re-showered, to “undo” whatever that contaminated thought had been. My hair was a mess and I had to quickly make do with what I had. These seemingly little things turned out to be significant losses for me as I look back.
Every milestone, every achievement, every big event my children have, I am reminded of those events in my own life and am still haunted by the ways in which they could have been different, perhaps better. Of course, I know that no amount of thinking can change the past. It is what it is and can’t be different now. Still, it sometimes seems selfish to feel profound sadness at what I missed out on at someone else’s happy occasion. What I’ve come to realize, though, after all of these years, is that it’s okay to feel this way. Grieving the loss of experiences, moments, and time is just as important as any other type of grief.
Letting go and forgiving myself
Part of my recovery journey has been allowing myself to feel all those hard feelings. I first needed to recognize that OCD, even during all the years we didn’t have a name for it, was very real and profoundly impacted my life. I needed to give myself permission to grieve what I could not experience. I needed to let go of the should’ve and could’ve and accept what was. I needed to forgive myself for all of my perceived wrongs. I had to understand that I did what I could with what I knew at that time.
Loss is loss. No matter what led to the loss, it is still worth grieving. It will be hard, but it will be worth it. Give yourself permission to feel the sadness and to recognize your pain. Forgive yourself for what you didn’t have and what you didn’t know.
We can’t go back in time, but we can keep moving forward. I can live the next phase of life in a meaningful way. I can make new memories and have wonderful experiences. I can give the experiences that I wanted to my children: the big graduation parties, the fancy dresses for dances. I can encourage them to not let fear stand between them and what they value. I can use my story to inspire others to not allow OCD to control their lives—and you can too.
Getting the right help sooner rather than later
If you think you or your child has OCD or anxiety, you should seek out someone specialty-trained in exposure and response prevention (ERP) therapy. Research shows that this is the most effective therapy for people with OCD. Children and teens with anxiety can also benefit from ERP. Traditional talk therapy uses skills that may be helpful for many areas of mental health, but is often not the right treatment for OCD.
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At NOCD, our licensed therapists deeply understand OCD and anxiety, are specialty-trained in treating OCD with ERP, and receive specific training in treating children, adolescents, and adults. We work side-by-side with the OCD experts and researchers who designed some of the world’s top OCD treatment programs, ensuring the best care for our members. You can book a free 15-minute call with our team to learn more about your child getting matched with one of our therapists and starting OCD treatment.