Grief and Reimagining Advocacy Goals

Life with a rare disease can be unpredictable, and the mental health toll can be significant as we often grapple with loss and grief. Grief doesn't have to be for the loss of someone in our lives. It can also include loss of dreams, hopes, goals, life before diagnosis, etc.

Processing grief

Grief is transformative. It can lead us to re-evaluate life, changing our worldview and how we approach people and situations. Grief is a transition of learning how to live life without that which we lost. A transition of any kind can be difficult as we process changes. However, transition periods can also be helpful and allow for new possibilities we didn't imagine before.

Grief impacting rare disease advocacy

When overwhelmed with grief, it can change how we approach rare disease advocacy. I recently lost my mom, who also shared the same rare diseases as me. I'm learning that grief in advocacy is different from burnout in advocacy.

The only thing I can genuinely focus on presently is my mom, and my usual advocacy efforts feel wrong, like a betrayal of her memory and legacy. I'm compelled to keep her legacy alive. Since my mother and I share the same rare diseases, it fits well with my advocacy efforts.

What does my advocacy look like now?

That's how I'm choosing to look at advocacy as I learn to live without my mom's physical presence. I know I will continue my rare disease advocacy efforts, but I'm unsure what that will look like. While I step back from advocacy, I think about what I want it to look like when I fully return. I'm freeing my imagination to discover what feels right for my needs, healing, and mission.

Giving myself grace

Letting imagination loose is one key, but giving myself grace is the other, which is just as important. Grace is taking the pressure off myself to jump right back into life. Grace is allowing myself to move through grief. It's giving myself rest when I don't have the mental capacity to advocate.

Grace is something I've struggled with most of my life and have been learning through my self-care and self-love journey in trauma therapy for the last couple of years. Grace is giving me the space I need to allow my imagination to find what fits for the future.

It's okay to take steps back, even though it doesn't always feel like it. As health leaders, it's easy to place immense pressure upon ourselves to give 100 percent to our communities, answer every call for help, and be "on" all the time. We don't have to be nor should we.

Setting new boundaries

Boundaries are healthy and vital during transitional periods, especially grief. Without giving ourselves grace and self-care, grief can too easily spiral into burn out. Grief is already complicated enough to process without the extra layer of burnout.

Instead, I'm choosing to utilize this time to re-evaluate my approach to advocacy.

• What is the specific message I want to focus on?
• How do I want to spend my time conveying that message?
• What do I need to change in my personal life to meet my needs?
• What new boundaries do I need to sustain my advocacy?

How do you handle grief?