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When we lose a loved one who we had a complicated relationship with, our grief might feel layered and complicated too. In my experience, this is especially true when the person struggled with challenges that affect how they relate to others.
My late brother Alan had the rare genetic disorder Prader-Willi Syndrome (PWS), which causes symptoms such as violent mood swings, insatiable hunger, sleep issues, obsessive behaviors, and developmental and cognitive delays. I was Alan’s little sister – three years younger than him and half his size – but I also acted as his caregiver for many years. I was also frequently the object of his rage. I loved him deeply, and I was terrified of his violent outbursts.
For much of my life, I constantly worried about Alan’s well-being—his happiness, safety, and future. I also longed to know more about his interior world, which he couldn’t communicate. What did he hope for? How much could he understand about his condition and our relationship? At times, I longed to simply be his younger sister, with the lightness and ease I saw other siblings enjoy.
When Alan died suddenly at age 43, some of my friends assumed I’d feel relieved. After all, he was no longer suffering from the agonizing symptoms of his genetic disorder. Right? I’d no longer have to fear his violent episodes. And, since Alan could never live independently, there was no longer the question of who would care for him into old age. Surely, I’d feel glad to let go of that responsibility, they assumed.
However, relief was not part of my grief experience. When I heard the news that Alan died, I felt a gut punch of sadness. I felt pain and confusion over losing a brother too soon. And, I also felt the loss of the possibility of a different relationship for us and a different life for him.
Weeks and months passed, and I realized that there’s no right or wrong way to experience grief. As much as my well-meaning friends wanted me to feel relief, I had to face whatever emotions arose.
Years later, I’ve written a memoir about loving and losing someone with a disability. I’ve heard from hundreds of readers who have lost people they had complicated relationships with due to mental illness, substance use, abuse, or other challenges. I’ve conferred with grief experts, and I’ve compiled a few suggestions for processing these unique losses:
I followed my own timeline.
Some people think it takes a prescribed amount of time to grieve – maybe six months or a year. But many experts say that grief doesn’t have an expiration date. “There is no perfect formula for grieving that any of us could apply to our losses,” explains renowned grief therapist and author Claire Bidwell Smith, LCPC. We don’t wake up on the anniversary of our loss and suddenly love or miss the person any less.
Many people find that grief does change shape over time. It won’t always feel so agonizing as it does those early weeks. But the timeline is different for each person.
I learned to be kind to myself.
Following any type of loss, there will be well-meaning people who will tell us how we should feel or what we should do. But the priority is to have self-compassion. During my grief, I let go any expectations of how I ought to feel, or what I should be doing. I learned it's okay to set a boundary and tell someone, “I’m not looking for advice right now.”
I found people who understand.
When we are ready to connect, we can look for people who are likely to understand the nuances of grief. Maybe that’s a grief circle or a friend who has experienced a similar loss. Confidential support groups allow us to express complex feelings that we might not be able to admit in everyday life. A skilled, trusted therapist is also a great resource, especially if they have experience helping people with losses similar to ours.
In my experience, no matter what kind of relationship one had with a loved one, the sting of their death may always be there. Navigating it is less about “moving on” and more about how to move forward, carrying the grief with us in a meaningful way.
