Dealing with Grief When You Have OCD

There are no words that can fully convey the depth of grief and loss. Each experience is unique and personal to the person experiencing it. It doesn’t matter who or what you have lost; you are often broken, left confused, and hurting. In its wake, death often leaves unanswered questions, heartache, pain, and uncertainty. This is all true whether you have OCD or not. 

In the wake of the pandemic and the cycles of nationwide or global tragedies that can sometimes inundate our worlds, many other people have been left with a profound sense of ambiguous grief, too. For those of us with OCD, the condition becomes strongest in these periods of stress. 

OCD wants more than anything to have certainty, to explain the way things are, and to be in control. Death is none of these things. Death doesn’t wait until someone is ready. It doesn’t explain its reasoning. It doesn’t ask permission or give up its control. Its power is in the terror it incites and in the unknowns it produces. 

A bit about my experience with grief and OCD

My reason for writing this particular article at this particular time in my life is quite personal. I share it, like I do other personal stories, with the intent that there may be someone out there who needs to hear it. 

Earlier this year, my mother passed away. She has always been my best friend and my biggest supporter, for all things OCD and otherwise. Every single day I miss her. I miss her more than any words could ever express. Everything reminds me of her. 

When I was a child, my first signs of possible OCD were that I was always so anxious to be away from my mom. Some of my first fears were of losing her. I feared she could get into an accident, so I had several rituals I would do daily to “keep her safe.” I didn’t know at the time that this was OCD. 

I am not sure why OCD chooses certain things or people to attach itself to, but it tends to go after things we cherish and value most. My mom certainly fits in that category. Since I was a child (I am in my 40s now), my fear of losing her has been constant. The idea of going through life without her was unbearable. The truth is, I never thought I would survive it. Even though I am fully grown with my own family, I still felt that if she died, I would be all alone. 

Even after all of the therapeutic work I have done for over 20 years, both as a patient and as a provider, this fear lingered. About 6 years ago, my step-dad whom I loved dearly died of Alzheimers, and my mom came to live with me. She had been diagnosed with Parkinsons and had several health issues. She had been unhealthy and it was really just a matter of time before it all caught up to her. 

Even when you know something is coming, it is hard to prepare for it. I’m not sure it’s possible.

I include all of this to say that my biggest fear, the one that OCD latched on to most, was losing my mom—and it happened. And I am still here. I keep going. Day by day, I live my life. Life doesn’t stop, even if it feels like your world does. Each day has its struggles and its joys. I don’t know if being without my mom will ever get better or will feel “normal.” What I do know is that I am going on in spite of my worst fear happening. That is what having OCD and doing exposure and response prevention (ERP) therapy has taught me: that I can keep going on. Even if I’m afraid, even if I’m uncomfortable, even if it feels like everything is crashing down. 

Without my treatment experience, I know this pain would be so much more difficult. But with the knowledge I built through ERP, I know that even if I am afraid or feel devastated, I am able to keep going. There is no way to get past these struggles but to go through them. In ERP, I learned not to avoid difficult feelings. It’s what I choose to do with them that matters. 

OCD demands certainty, even in grief

Death can cause countless what ifs, regrets, unfulfilled hopes, and unknowns. It’s no wonder that OCD latches onto this. OCD wants control. OCD wants certainty. OCD wants answers and will stop at nothing to get them. That is why compulsions occur: they are an attempt at gaining some kind of control or peace in a stressful situation. OCD wants you to believe that if you “just do this one thing” or “solve this one question,” all of the discomfort and anxiety will dissipate. 

That’s a lie. It may work for a moment, or maybe the fears will seem to go away for a while. But they always return, demanding certainty. Eventually, the compulsions aren’t enough, making OCD even worse.

In your life, you will encounter grief and loss. You probably have already. We all have in some way, with the nationwide and worldwide events happening. Someone close to you will pass away. You can’t predict how it might affect you, but grief can be life-altering. One minute you are going about your life, and the next minute everything changes. Grief can sneak up suddenly, or it can strike even when you think you’re prepared. You can never know for certain. 

Grief can intensify OCD

Regardless of how or to whom it happens, grieving death can affect people with OCD differently. Depending on the theme of intrusive thoughts a person has, they may feel guilt or shame, and OCD may even look for a way to blame them for their loss. OCD can be cruel that way. 

OCD is constantly looking for a problem to solve, like a puzzle piece that is always missing. It demands certainty to complete the puzzle. But the certainty that OCD demands does not exist. It will always demand more and more, never satisfied. 

For people with OCD, everything that happens in their life can become prey to the disorder. For example, if someone close has passed away, OCD may whisper in your ear, “you were mean to that person last time you saw them, and now they died thinking you hate them.” Or, “you could have done something to help them.” It may even say things like “you should’ve prayed more” or “you secretly wanted this to happen.” These are just a few of the ways people have described OCD rearing its ugly head following the death of someone they cared about. 

OCD is a constant accuser: always there to try and point out anything that possibly could have been bad that you have said or done. It brings with it immense guilt and shame and a sense of urgency to try and prove it wrong, only to become exhausted with fruitless attempts.

It is important to recognize that no matter what topic or theme OCD takes on, it always works the same. It wants you to think that you did something wrong, that you are flawed, that you are responsible for everything, that you can’t trust your own experiences. It causes doubt at a deep level, causing intense urgency and anxiety. No matter what it attaches itself to, its goal is always the same: to make you doubt the very core of who you are.  

People with OCD not only have to deal with the pain and sorrow of loss, but also the intrusive ideas and irrational thoughts surrounding their own grief. Often this leaves them feeling isolated, alone in their experience. How do you tell someone the nonsensical thoughts that you are having, especially if they’re grieving, too? 

The path to long-term management of OCD

We live in an uncertain world, and life is unpredictable. Life is a story that each one of us has a part in writing, but we don’t have full control over it. It is full of twists and turns that we can’t account for. The idea of certainty or control is a lie that OCD tries to get you to believe.

OCD will lie, cheat, and try to get you to avoid it, instead of confronting it. Like death and grief, it can leave you feeling hopeless. But there is hope. OCD is highly treatable, and you can recover from the symptoms and manage it. OCD is not where your story ends. 

A specialist who is trained in OCD and ERP can not only help you address the intrusive thoughts, feelings, images, and compulsions surrounding death, but also help you cope with the very real grief and loss you are experiencing. They can help you to sit with uncertainty and lack of control, giving you the freedom you need to experience long term relief from OCD.

ERP therapy works by exposing you to the very fears brought about by OCD, then teaching you to resist doing compulsions in response. It teaches that you must face uncertainty, look it in the eye, and keep moving forward. You can’t avoid it or fix it: you just learn to let it pass. 

If you’re struggling with OCD, please know that there’s hope. I’ve been where you have been, and I know from my own experience that you can get better. 

Our team at NOCD is here for you, and we can help you on your path to recovery. Our licensed therapists deeply understand OCD and are specialty-trained in treating OCD with exposure and response prevention (ERP) therapy. 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. I encourage you to learn about NOCD’s accessible, evidence-based approach to treatment.