Recently, I received an email from the IBC Network Foundation looking for applicants to volunteer as IBC Patient Advocates at the 2024 San Antonio Breast Care Symposium.

Part of me was thinking I just wasn’t ready. It was just a year ago when I was diagnosed with Stage 3 Triple-Positive IBC. I only finished trimodal treatment four months ago, and while I’m currently NED (No Evidence of Disease), I’m still in active treatment to lower risk of recurrence. I wondered if perhaps I should take a break from IBC for a while.

But then three questions popped into my head. These questions were posed by a sage named Hillel over 2,000 years ago, and they’ve always resonated for me. And when I answered them, I knew I had to apply.

If I am not for myself, who will be for me?

I believe that nobody can understand IBC – and the medical and funding inequities that accompany it – better than those of us who have experienced the disease, whether as a patient or as a loved one. We know there is a lot of work to do to make things better for ourselves, as well as for future patients and their loved ones.

So, if we don’t take action, who will? Who will be as passionately committed to improvement as we are? We need to “be for ourselves.” Getting more IBC-specific research can benefit us whether we are living with recurrence or are NED and concerned about recurrence.

If I am only for myself, what am I?

Of course, it’s not only about making the IBC landscape better for those of us who have been patients. Because advocacy work can help future patients – education to decrease misdiagnosis; more research leading to more and better  treatments; and who knows, maybe even prevention someday.

When I was diagnosed with IBC, I received so much help from the IBC Network, both from its excellent online resources and then from the IBC Zooms led by Executive Director Terry Arnold. I also received so much support from friends who previously had breast cancer and wanted to pay forward the help they received. I want to pay that help forward. By volunteering, we can be both for ourselves and for others.

If not now, when?

I decided now was the time to seize the opportunity to help. I’m not suggesting that all IBC survivors should drop everything and volunteer tomorrow. We’ve been through the wringer. We all need time to heal mentally and physically from treatment, and that timeline will be different for everyone. Additionally, I acknowledge some folks simply do not have time to volunteer or may never feel up to being an advocate.

But for those who can, there are many ways to act. If attending medical conferences is not your thing, maybe your interests run to doctor or patient education? Or legislative action? You can always reach out to Terry Arnold for ways to take tangible action to help.

Finally, as those who have wrestled with a rarer disease, we are a relatively small number, yet we are mighty. Whenever I get discouraged at how much there is to do to effect change, I try to remember the wisdom of Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

I want to be part of that group making a difference. Join me?