Rare Disease and Grief – Its Ok That You're Not Ok with Megan Devine

Once Upon A Gene

Rare Disease and Grief – Its Ok That You're Not Ok with Megan Devine

April 29, 2021

Rare Disease and Grief – Its Ok That You're Not Ok with Megan Devine


Rare Disease and Grief – It’s OK That You’re Not OK with Megan Devine

Megan Devine is the author of It’s OK That You’re Not OK, a psychotherapist, a grief advocate and communication expert dedicated to helping people face their toughest experiences. This book, her story and explanation of grief changed everything for me. After this episode, be sure to get a copy of the book for yourself, join her community and check out her new illustrated journal, How to Carry What Can’t Be Fixed.


Can you share the background on how your book came about?

I’ve been a psychotherapist for about 18 years working with trauma, but when my partner died in an accident, my perspective on loss changed. I saw that the way we talk about grief in culture is flawed. When my partner died, I closed my practice. I began speaking about grief publicly, training and writing books to do what I could to help grieving people feel more heard and supported. Today, I’m a psychotherapist, author and grief advocate and I talk about the ways we get grief wrong and what to do better for us and for others. 

What are the biggest misconceptions about grief?

Grief usually belongs to death, but grief is a spectrum and you get to claim grief for yourself. Just because other people may have it worse doesn’t mean you can’t grieve. You don’t have to demote your grief based on other people having more of a right to be grieving. All grief is valid, but that doesn’t mean that all grief is the same. If we can be curious about the different ways we grieve, it’s a way for us to come together to talk about it and meet each person’s loss and grief with curiosity instead of trying to fit it into a one-size-fits-all package. 

What do you mean by “some things can’t be fixed and they must be carried”?

We live in a problem-solution culture. Not everything has a solution and not everything works out for the best. It’s not our job as humans to rise above everything. It’s not realistic.

Tell me about the movement you’ve created for people to acknowledge their grief.

When we tell the truth about grief and let people tell their truth about their own experience, they get to just be in pain. If you think about grieving, you often find that you have to defend your grief and experience. That need to defend your experience causes annoyance and suffering because you’re expending energy on defending your right to feel how you feel instead of feeling supported. Refuge In Grief is online, on Instagram, Facebook and Twitter. Refuge In Grief is the grievers community. We have to start normalizing grief and talking about what it’s really like and what power there is in healthy grief. There’s also a Writing Your Grief course that has awesome writing prompts, but mostly a magical community that forms during the live sessions. We open new sessions about every five weeks.

How can we show up for someone who is grieving and support them?

Interrupt your impulse to fix. It’s human to find it difficult to watch someone you care about in pain and not try to make it better. Recognize your impulse to make it better and think about what you can do that would feel supportive in the moment. Don’t assume you know what someone needs, don’t jump in with solutions, but instead acknowledge and offer what you can offer and ask if your offering is helpful.


It’s OK That You’re Not OK

How to Carry What Can’t Be Fixed

Writing Your Grief

Speaking Grief Documentary

Refuge in Grief

Refuge In Grief on Instagram

Refuge In Grief on Facebook

Refuge In Grief on Twitter

You may also like

Top Health Podcasts. Delivered to Your Inbox and Eardrums.

Join Our Newsletter

Proudly supported by:

How is Parkinson’s Disease Diagnosed? And How Is a Care Team Created? Parkinson’s disease can’t be diagnosed through a simple blood test or scan. After a referral from a primary care doctor, it often takes visits to a neurologist or movement disorder specialist before receiving a clinical diagnosis.