The Mighty Logo

What Complicated Grief Is Like

The most helpful emails in health
Browse our free newsletters

Twelve years ago, my 13-year-old son Eric died after a courageous, 16-month-long battle with cancer. For the next four years, I fought my own battles dealing with my loss until I was able to give it a name — complicated grief — and receive treatment for it.

I was unprepared for my grief and how others would react to it. I worried people would be uncomfortable seeing me emotional, so I tried to protect them by remaining silent and avoiding them. I felt the sting of rejection by friends and acquaintances who now viewed me differently. I felt people’s impatience when I was unable to shake off feelings of sadness, anger, confusion and loneliness even years after Eric’s death. I lost faith in the goodwill of others and felt a painful sense of isolation.

When I lost Eric, I felt I had lost part of my identity; it was as if I no longer knew who I was. The fact that people couldn’t talk about it made it even harder. I had to learn to live in a world without Eric, and I couldn’t do it.

I don’t remember much about those first few years. There were times I was paralyzed by my grief. There are so many things I don’t recall doing. I do remember coming home to our empty house after driving my daughter Lauren to school. I would sit on the couch and stare out the window until I had to pick her up. I didn’t answer the phone. There were times when I floated and just went through the motions of cooking, cleaning and holding a conversation. It was a time of numbness. It was a time when the pain was so intense, it was actually physical. What I didn’t know at the time was I was struggling with complicated grief.

Complicated grief is an intense and long-lasting form of grief that can take over a person’s life. People with complicated grief often say they feel “stuck.” Nothing seems to change, and it’s as if the death happened the day before. Time stops and so does the mourner’s involvement with life. People with complicated grief may believe their lives are over and the intense pain they feel will never end. They may think that by enjoying their life, they are betraying their loved one. I know that’s how I felt.

Grief is a reaction that can help us cope with loss. When grief is working, different feelings associated with grief can guide and motivate changes that help people adjust to the death. Uncomplicated grief is a natural process of grieving that certainly involves “upheaval in life” and great emotional pain but often enables people to progress and come to terms with the finality of their loss. While the grief never really ends, they can become able to resume their daily activities and integrate the loss into their lives. Most importantly, they can begin to engage in their own lives again. I couldn’t.

Although grief is always difficult, for some people — like me — the process can go awry. Like me, people with complicated grief may not know what is wrong with them. They can’t stop yearning for the person who is gone. They have strong urges to touch, hear or smell things that remind them of that person — yet, at the same time, they can get so emotionally and physically activated that they want to avoid people, places or things that act as reminders.

There were many reasons why the grief process went awry for me. One of the road blocks was my fear that I would somehow lose the memories that connected me to Eric. I seemed unable to remember the good times, and was constantly tormented by the bad ones. My thoughts frequently turned to self-blame. Why hadn’t I known how ill he was? Why hadn’t I gotten him treatment faster? Had I made the right decisions? Of course, these questions had no answers, and they just made the pain worse.

Grief needs to be shared with others, perhaps to lessen the burden on the mourners themselves, and to remind us it is a universal experience. I couldn’t do that until I finally got the treatment I needed in a research project at Columbia University. I was helped by a short-term therapy specifically designed to target complicated grief.

The first thing that impressed me were the questions I was asked during the initial interview. No one had ever asked me before if I was having trouble accepting the loss or whether I felt angry or bitter about it. My therapist seemed surprisingly comfortable talking to me about Eric and how grief-stricken I was. She said she would not pretend to understand how I was feeling but wanted to hear anything I wanted to tell her. This was the first time I felt I didn’t need to take care of someone else. I began to see a glimmer of hope.

What really made the difference, though, were the imaginal exercises. One involved revisiting the period of the death, and another entailed having an imaginary conversation with the person who died. By repeatedly telling the story of Eric’s death, I was able to notice things I hadn’t paid attention to. I started to focus on all the love and support Eric had received. These exercises were remarkably effective, transforming my grief and changing my life.

Today, I can say that, of course, my life was permanently changed by losing Eric, but I know it is possible to make a new life that is rich and satisfying — though often tinged with sadness.

Now I find myself going and doing and functioning, and taking joy in life and its challenges. I never believed that would be possible, but I assure you it is. There are still times, especially good times, when the pain of missing Eric stops me in my tracks. But there are good times.

I believe I have grown in my ability to be compassionate and to understand the pain that others may be experiencing. Once you know the pain of excruciating, incomprehensible loss, you can’t un-know it. But when you endure struggle, you can also learn empathy.

I am sharing this because until I was diagnosed and treated with complicated grief — which I had never even heard of before and which 7 percent of bereaved people struggle with — I felt isolated and like my life had no meaning. I hope my story will reach anyone who’s feeling like that and show them there is hope. I even appeared on CBS to spread the word about complicated grief and help others who may be struggling. The Center for Complicated Grief has a website and can be found here.

Image via Thinkstock.

If you or a loved one is affected by loss, you can find grieving resources at The Grief Toolbox.

We want to hear your story. Become a Mighty contributor here.

Originally published: February 10, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home