When I think back on my own childhood, I am often filled with sadness. I am filled with an emptiness that is difficult to describe. I have a sense of longing for what could have been, for what should have been. I am filled with memories of missed opportunities, forgotten dreams, and impaired relationships.
Specifically, when I look back, there are so many things that OCD kept me from doing. When I was 15 years old, I remember being excited to attend an exclusive fine arts camp. It was costly, but I had talked my parents into letting me go. It was something I am sure I would have loved and that likely would have been an amazing, one-of-a-kind experience.
Once I was accepted, I was filled with joy. But within days, this joy was replaced by extreme fear and worry. I began to dread the trip I had just been so ecstatic for. I was scared to be away from my safe haven; I had created a bubble, and leaving it seemed too frightening. OCD also made me feel overwhelmed by thoughts of all of the “what-ifs” that could happen while I was away – like, what if something bad happened to a loved one, and I wasn’t there to protect them?
I panicked. I backed out. It cost my family a lot of money because it was non-refundable. But the cost of a missed opportunity was even greater, a missed chance to experience something I desperately had wanted to experience.
Like with the many other things OCD took from me, I later became filled with regret. Regret over not having lived the life I wanted, having been so encompassed with fear that nothing else mattered at the time. What I didn’t realize for many years was that this experience was a form of grieving.
A life stolen by OCD can lead to grieving
Grieving is a difficult thing. People grieve when they have experienced something tragic, and yet we rarely hear people talk about grieving the loss of their mental health or of a loved one’s mental health. This is such an important concept – people need to come to terms with the lost months, days, or even years that they often experience when a condition like OCD is affecting their lives.
Grief can look like many things to many people, and it may involve anger, denial, pain, guilt, shame, reflection, depression, reconstruction, or acceptance. These emotions can come and go, and they do not necessarily happen in a continuous fashion.
What many may not realize is that an important part of the OCD recovery journey is that a person recognizes the grief and sadness they have about the past and the things they feel that were stolen from them by the condition. People often describe feeling robbed of experiences that other people had.
For me, recovery started with letting go of the grief from what could have been, and accepting what was; accepting where I am today and how I arrived here. It is releasing the what-ifs of the past and instead focusing on what is and what was. Knowing I cannot change it now. It’s in the past. I can only move forward.
Everyone has choices to make. Everyone has regrets. You may not have chosen your past, but you do get to choose what you do with what you have been given. And although the choices that we make today may have an impact on tomorrow, there will always be things that we cannot prepare for, things that are out of our control.
That’s why recovery doesn’t mean that you are completely prepared for everything that will come your way, but it is a recognition that you have gotten through everything so far, so your chances of managing whatever comes your way are pretty good. Recovery is in essence “I will cross that bridge if and when I come to it.”
Recovery is not linear
Recovery doesn’t typically happen in a neat, organized manner. It is often messy and chaotic. It can vary from day to day. It can look like progress one day and defeat the next. The good news is that recovery is the sum of all those days, and it’s about having more good days than not.
Recovery means living a life you want to live without the restraints of OCD the majority of the time. It is being able to function in a way that brings you joy and hope. It is not perfection, and it is not the absence of symptoms. It is having the ability to cope with and face the things that once held you back from experiencing the life you wanted to live. Maybe the illness kept you from doing things you truly wanted to do. Maybe it made you believe things that were not true about yourself. Perhaps it caused you to isolate yourself from those who cared about you. It may have even consumed your life and left you exhausted.
Recovery can look like many things. For me, it looks like choosing to not let fear stop me every day. I made a promise to myself that if the voice of OCD was saying I couldn’t do something that I wanted to do, I would do it more often than not. I told myself that I would not allow OCD to steal any more of my life.
For me, recovery was also making up for lost time as well as I could. It would mean living more in the moment and letting go of past habits, past regrets, and past grief for what I missed out on. It is creating a meaningful life now and trying to make something beautiful from the pain.
Finding the purpose
Many people with OCD that I have worked with over the years ask one seemingly simple question: Why? Why do we have this illness? The truth is that I don’t know. But I would counter that question with my own: What has it taught you? What have you gained through this experience? If you look close enough at any situation, you can almost always find something valuable from the struggle. Without winter, there would be no spring. Without rain, there would be no flowers.
It may not look like what you envisioned for yourself. At first glance, it may seem impossible to overcome or to bear. What I have discovered is that while OCD never fully goes away, you can live in recovery. I also know that this will look different to everyone.
For me, recovery is letting go of what I think “should” have been. It means accepting what was and seeing it in a different light. It means not focusing on what it has taken from me, but what I have gained from my experiences. I don’t know what “could” have been. I only know “what is.” And I know that “what is” has brought me to “right now,” this moment in time.
I have survived and continue to thrive in spite of OCD, in spite of what the World Health Organization says is one of the top ten most debilitating illnesses.
Managing and letting go
OCD is a lifelong battle. But it is one that is manageable and one that doesn’t consume me. Letting go of “what if” and “what should’ve been” have helped me focus on “what can be.”
This is a daily challenge. Every single day I must remind myself of the skills I learned through exposure and response prevention (ERP) and practice them. I have to put action behind my words. For example, I have to continue to resist urges to do compulsions on a daily basis. I have to sit with difficult feelings as they arise and allow them to pass on their own. Thankfully, this happens significantly less than it used to, thanks to effective treatment.
ERP has taught me to allow the intrusive thoughts to be present and to not engage with them, but instead to sit with the anxiety they create until it passes. ERP allows me to have long-term relief from anxiety instead of the temporary relief that comes when I perform a compulsion in response to an intrusive thought. It is not always easy. But treatment has instilled in me a sense of hope, and the knowledge that I can do very hard things. That I can feel a certain emotion and yet choose my response.
I still have OCD. I still get afraid. I live with it, I manage it, I am in recovery. I am not “cured” from it. I have not gotten rid of the intrusive thoughts or the compulsions. They are there. But they are so much quieter than they used to be. I know my triggers, I know how this condition works. I am aware of the subtle ways in which it tries to creep up. I have become quite skilled at not engaging with it.
I am also a human being and I am not perfect. Sometimes I give in to compulsions, sometimes I ruminate on things. I know that’s okay, too. The important thing is that most of the time, I don’t do those things. Most of the time I am able to keep moving forward. I choose to live my life, to face my fears, and to feel all of the hard things that I naturally would want to avoid. I choose courage, which doesn’t mean the absence of fear. I am continually learning, often inspired by the many stories from my members about how they are fighting this illness and overcoming it.
I reach thousands of people through my work at NOCD as a therapist and as a writer, where I get to share my experience and help others realize that there is hope on the other side. And I am in constant amazement at the bravery of people with OCD. What I share with them is that recovery is a day-to-day practice. It is actively choosing to do something differently. It is being vulnerable and reaching out for help when you need it. Recovery is so many different things to so many different people. It is unique, it is progress over perfection, it is moving forward one day at a time, and sometimes one moment at a time. It is recognizing that you are not alone.
If you’re struggling with OCD and are ready to begin your own treatment and recovery journey, NOCD is here for you. Our licensed therapists deeply understand OCD and are specialty-trained in treating OCD with ERP. We work side-by-side with the OCD experts and researchers who designed some of the world’s top OCD treatment programs – and that means the best care for our members. You can book a free 15-minute call with our team to get matched with one and get started with OCD treatment.