How We Got into Advocacy
Advocacy. That word didn’t bear much meaning to me… until I got sick. When I got sick, chronically ill to be exact, advocacy took on a huge, incredible, magnificent, symbolic meaning for me.
Right now, I am diagnosed with chronic complex migraine, episodic cluster headaches, fibromyalgia, rheumatoid arthritis, Ehlers Danlos Syndrome, Chiari Malformation, and a variety of mental health issues. It’s a laundry list, but when I came across the quote: “turn your pain into purpose and your wounds into wisdom,” I knew I’d stumbled upon what I needed inside of me. I needed to raise my voice and not let my suffering go to waste.
As I began to get involved with support groups and raising awareness of my afflictions, I realized just how essential advocacy is to those who have been robbed of their health. In so many ways, I encouraged myself to go beyond my fears to open up and be honest about my own story and through doing that, give a voice to those who have had to remain silent for whatever reason about their illnesses. Whether it was shame or embarrassment, an inability to advocate for themselves, from extreme disability to simply feeling too anxious to speak up. These reasons and more drove me to continue the journey to raising awareness and telling real, raw stories.
My passion now, as it has begun to grow over the last 3 years, is being an advocate through and through. Shouting my story loud and clear is empowering and using my voice as a tool is cathartic. I love knowing that I can be a vessel for change and raising awareness, and to also gently show others that they are not alone in their fights.
I come from a rural background and in my culture you just take the doctors, nurses, and any other medical professional at their word. It is considered rude to question them because they are smarter than you, the patient. You simply do not ask questions about your illness or medications and you most certainly would never ask about treatment options.
When my migraines reached the point of being hospitalized in April 2016, I had been having migraines with paralysis for 20 years with no diagnosis or treatment. The doctors I had seen didn’t seem to think it was serious. So, then, to me, it wasn’t serious. But in my hospital room that day in 2016, a neurologist said something that I will never forget. He told me, “it is a migraine… just get over it.”
I then decided to stand up for myself by finding answers and better medical care. I was frustrated and wanted to quit, but my husband wouldn’t let me. At that moment, I became a partner in my medical care.
I became my own personal advocate and I am now using the knowledge I have gained to help others see the importance of being a partner with your medical team.
So why is Advocacy Important?
Why Should You Advocate?
– Advocacy aids in research by raising funds for organizations.
Advocacy involves a lot of fundraising. We try to get as creative as we can because we want to provide a good incentive for people to WANT to donate their money to a cause. Sometimes just the simple fact of giving isn’t enough, which is why you find advocates sporting t-shirts, jewelry, and more to help their cause. It’s not such a bad thing, though—fundraising with fun incentives makes the act of doing it that much more enjoyable.
– Advocacy work can bring new friends into your life who “get it.”
Most of the time when you’re working in advocacy, you’re working alongside people who have the same health issues you have, and therefore, these people become your people; they just “get it.” Your fellow advocates can become some of the best and closest friends you’ve ever had just for the simple fact that you share one problem you want to raise awareness for. These are your friends in sickness and in health.
– Being your own medical advocate is vital to receiving the best medical care.
It is imperative to know as much as you can about your illness and the treatment options available. Research, research, research! Know everything there is to know and more. Talk to other patient advocates about their experiences, or even tell your own story for others to read. This can help you know what questions to ask and to make the best decisions about treatment with your healthcare provider.
– Advocacy demands accountability.
Advocates can help bring doctors, nurses, medical facilities, administrators and patients together to improve medical standards. In doing so, this provides the accountability necessary to ensure that standards of care are being met.
– Being an advocate can be personally rewarding.
If you have a chronic illness, even if it’s not migraine, getting involved with other similar people can be life-changing. Many people describe it as an empowering emotion, feeling as though they’ve helped bring about action or make a change, or that they’re even giving their lives a purpose. Whatever the reason, we’ve never heard an advocate say it was a negative experience.