by Gina DeMillo Wagner

The mental health community defines complicated grief as a severe form of mourning that doesn’t resolve with time. It’s classified as a disorder when the grief interferes with a person’s day-to-day functioning. But what do you do when your grief doesn’t fit the official definition of “complicated grief,” and yet, still feels complicated? For many of us in the rare disease community, complicated grief is an ongoing reality. The psychology textbooks don’t apply.  

My relationship with my brother was complicated, and so was my grief after he died. Alan lived with Prader-Willi Syndrome, a rare genetic condition that caused violent mood swings, insatiable hunger, sleep issues, skin picking, and developmental and cognitive delays. I was Alan’s younger sister, but for many years I was also his caregiver – and often the object of his rage. I loved him deeply, and I also feared him. I worried about his care, his wellbeing, his happiness, his future. I felt joy alongside him as he watched his favorite movies or snuggled his beloved dog. I also longed to know more about his interior world, which he couldn’t communicate clearly. What did he dream about? What did he fear? How much did he understand about his condition? At times, I longed to simply be his little sister, with the lightness and ease I witnessed other siblings enjoying. 

When Alan died suddenly at age 43, some people close to me assumed I’d feel a measure of relief along with my grief. After all, he was no longer suffering the painful symptoms of PWS. I’d no longer have to fear his violence. And, since he could not live independently, there was no longer the question of who would care for Alan into old age. Surely, I’d feel relieved to let go of that responsibility, right?

But relief was not part of my grief experience. When I heard the news, I felt the gut-punch of immediate, unmistakable sadness. I felt the loss of my brother. And, I also felt the loss of the possibility of a different relationship for us and a different life for him. I grieved for the loss of ease, comfort, and independence he so deserved. 

In time, I realized that there’s no right or wrong way to experience grief. As much as my well-meaning friends wanted to define my experience or ease my pain, I was going to have to navigate it on my terms. There was no roadmap for my journey. 

And this speaks to a universal truth: Grief can be collective – meaning people can grieve the same person or loss at the same time. But it’s also a highly individual experience that doesn’t adhere to medical advice or timelines. There are types of grief that are complicated simply because the person or relationship you’re grieving is complicated. It doesn’t fit the societal norms for how things “should” be. (That’s true in many families, not just those that live with rare disease.) 

While each person’s emotional needs are different and every loss is different, I can offer a few helpful tips I learned through my own experience with grief: 

Practice radical self-compassion

Following any type of loss, there will be well-meaning people who will tell you how you should feel or what you should do to help your grief. But your number-one job is to have compassion for yourself. Release yourself from any expectations of how you should feel, or what you should be doing. Do whatever feels nurturing to you. Protect your energy. It’s okay to tell someone, “I’m not open to advice right now” or put your phone away to avoid seeing or hearing their messages. 

Talk with people who understand

When you are ready to connect, turn to someone who is likely to understand the nuances of your grief. Maybe that’s a rare disease support group, a grief circle, or a friend who also has experienced loss. Support groups are confidential and allow you to say the things that you might not be able to say to people in your everyday life. A skilled, trusted therapist is also a great resource. Ask them in advance what their experience is with helping people with losses such as yours. Sites like refugeingrief.com, whatsyourgrief.com, and modernloss.com offer helpful resources and articles (without the platitudes or timelines). 

Follow your own timeline

Many people think it takes a prescribed amount of time to grieve – maybe six months to a year. But that’s simply not the case. We don’t wake up on the anniversary of our loss and suddenly love or miss the person any less. Grief does change shape over time. It won’t always feel so agonizing as it does those early weeks or months. But the timeline is different for each person, and in some respects, the grief will always be there. Navigating it is less about “moving on” and more about how to move forward, carrying the loss with you in a meaningful way.

Finally, remember that your relationship with your person and their disease is unique and doesn’t have to make sense to anyone else but you. The very definition of rare disease means that it’s not common, and the rules or social norms won’t always apply. It’s okay to say, “it’s complicated.”

Gina DeMillo Wagner is a professional writer based in Boulder, Colorado. Her work has appeared in The New York Times, Washington Post, Self, Outside, Modern Loss, Experience Life, and other publications. She's currently working on a memoir. You can follow her work on Instagram @ginadwagner