Say It Loud

While preparing for my upcoming trip to DC, I have been thinking off and on about what advocacy means to me. This will be the first time on the Hill not advocating for hoteliers. I will be there on behalf of the National Kidney Foundation (NKF), speaking to lawmakers and others on legislation that affects those with kidney disease, including dialysis patients, transplant recipients, those on the waiting list, living donors, and caregivers.

As the days have gotten closer, the nervousness has dissipated and the eagerness has kicked in. To work and walk alongside staff members of the NKF and to meet and engage with fellow advocates is an opportunity I am grateful for.

Back to the question. What does advocacy mean to me?

In its simplest form, it is to help. Not just helping others, but also myself.

I am a big proponent of being your own advocate. Having gone through what I have, and still dealing with things that arise as being someone with Kidney Disease, I have learned how important it is to be active (and proactive) in your own treatment, well being, and other things that affect you.

For helping others, it is a broader approach. Writing and speaking for those who are or have been in my position is something I do not take lightly. Being a voice for those who are not able to speak up. For those who do not have a platform. That is advocacy to me as an individual.

I have to remember that Kidney Disease has many facets. Not just what I have personally been through. I was on dialysis leading up to my transplant. I understand how grueling, both mentally and physically, that can be. I have been in a dialysis center with my only thought being “What if I never get a transplant?!” I know what depression can feel like. I have been there, laying in an ICU bed, thinking those were the very last nights of my life. And of course, I know what it is like, going through the transplant process. Waiting for what seemed like an eternity until that fateful day, where I woke up after my surgery to a room full of nurses, who were my angels throughout the entire process.

But there is so much more.

The benefit of my trip to DC is that we will be conducting advocacy on a large scale. An article from Tulane University School of Public Health and Tropical Medicine titled Healthcare Advocacy on a Large Scale states the following: “Healthcare advocacy on a large scale guides lawmakers and leaders who from healthcare policy. It supports a well-informed decision-making process regarding programs that affect:

• Healthcare providers

• Patients

• Healthcare environments

Broad healthcare advocacy encourages reforms that put the newest research into practice and cultivate better partnerships within the healthcare industry. It also strives to push for health policies that better account for factors such as poverty, as well as other social and economic circumstances that affect people’s health.”

Please remember, I am not a medical professional, nor is any of this medical advice. I am just out here living A Kidney Life.