Posted in Advocate, Health Activist Challenge, NHBPM

NHBPM Day 5: Five ways I have changed since I started advocating


Today’s NHBPM: 5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

There are been so many things that I have changed my life since RA and Fibromyalgia came into my life. However, I am going to talk about the five ways I have changed since I started advocating.  I have always had a knack for helping people and that is why I went in the legal field in the first place.  In the beginning, I advocated because it helped me. Later on, I advocated because it helped others. After that, it was because I was good at it and then, my brother got sick, I did it because I had to.  Now, I do it in memory of my brother.  All these five reasons have changed my life and that has changed how I think and how I feel.

  1. I advocated for myself.  When RA and fibromyalgia first came into my life, I never felt more alone in my life.  In the beginning when Alliance Health approached me to be a patient advocate at Arthritis Connect, I did it because I needed to feel useful.  RA and fibromyalgia took so much from me including the ability to feel accomplished.  For the first time in a long time, I felt like I was accomplishing something and chronic pain wasn’t holding me back. While I was helping others to advocate for themselves, I was also learning to advocate for myself.  Learning to advocate for myself was the most important lesson that came from all this.
  2. I advocated for others.  In the legal field, I helped others but in the beginning, the only people I was helping were those who had the deep pockets.  I worked in insurance defense and even though I thought I had found my calling, I really hadn’t.  I was helping people who didn’t need helping and until I started advocating for both arthritis and fibromyalgia, I don’t feel truly proud myself.  For once, I really felt like I was helping people who really needed helping and I felt it.  It was a really good feeling.
  3. I was good at advocating.  Every day, I found myself an expert on topics I never understand prior to RA, fibromyalgia and my advocacy work. I knew names of arthritis diseases that people have never heard of and I could spell the names of medications that most people couldn’t spell.  I learned to decipher factual information from fiction and I found out I had a knack for understanding and retaining this kind of information.  For once, my knowledge wasn’t just centered on the legal field.  My advocacy work had educated me through choice and without any assistance.
  4. I did what I had to do.  My brother fell ill last year about this time.  I had at this point been advocating for nearly a year. I found myself fighting for my brother like I was fighting for my own life.  I fought with insurance companies, hospital directors, nurses and doctors.  I fought for him to have the best possible care. I thought that my hard work would pay off but a month and a half after my brother entered the hospital, we lost him. In the beginning, I felt like I had failed.  It took me awhile to find my way out of that mindset.  Cancer took my brother but I did not fail him.  I was there for him when he felt so alone.  I stood up for him when he couldn’t stand up for himself.  I was his voice when he didn’t have one. For the first time in my life, I felt like I had triumphed in a way that made him proud to have me as an older sister.
  5. I advocate in my brother’s memory.  For a long time, I told myself I advocated so that I would have a sense of purpose.  Later, I told myself that I advocated to help others.  I thought that I was doing it for something noble or something prestigious and maybe I felt that in the beginning.  Now, I advocate in my brother’s memory.  He saw me fight for him every day from the moment he entered the hospital to the day we lost him.  He relied on me to be his strength as his strength ran out and I made a choice from day one not to fail him.  I am still his strength and I advocate to continue to be that strength.

Advocacy and chronic illness have changed my perspective.  I no longer see success as how much money I make or what my professional title is.  I see success in faces, voices, and emails from those I have been able to reach out to.   I have definitely changed from someone who just wanted to climb the career ladder.

This post was written as part of NHBPM – 30 health posts in 30 days:


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