What is advocacy? Helping yourself and others

By: Marc Lasorsa

When I was asked if I would write an article about patient advocacy as it relates to my life experiences, my first thought was – how is this going to help anyone who may read it? As I started reflecting on my experiences, it became clear that, be it by happenchance or by deliberate action, my 45-year long journey to find treatments for my chronic illnesses and to find ways to live a full life, have provided me insight about how people have advocated for me and how I have advocated for myself, where I was successful and where, in hindsight, I should have been more diligent. It is this experience that I will share with you.

For me it began when I was 12 years old and was diagnosed with juvenile arthritis in both wrists and ankles. I began to feel some pain in those areas a few years earlier, but a very manageable pain. As months went on the pain increased to the point that I was unable to walk for the first few hours of the day and had to crawl on the floor until the pain went away or became more bearable. As the day went on, I had to tip toe my way around because the pain was so severe. My parents took me to our family doctor and after six months or so, I was diagnosed with juvenile arthritis and began treatment to deal with the inflammation on my joints. It also meant that I could no longer participate in sports, a difficult thing to accept for a 12-year-old who loved nothing more than to be active But with parental support and a desire to find a treatment, I kept hope that I could resume my activities in the near future.

In the mid 1970’s, the anti-inflammatory medications we see today were nonexistent and large dosages of aspirin were the prescribed treatment. The treatment at that time consisted of taking 12-16 aspirins a day One can only imagine the effects taking 12-16 aspirin a day would have on a 12-year-old boy. The results were not necessarily successful. But it was the best treatment available at that time. So, my mother as both my advocate and parent began searching for other remedies with the hope of ending her son’s pain from a chronic illness. And so, my journey to find better treatments began and they included alternative treatments, today we would refer to some of these as naturopathic remedies. My mother seeing her son in pain with no improvement, stopped at nothing, from wrapping my ankles in lard, drinking concoctions of teas, to visiting faith healers that promised to cure my ills with one touch of their hand on my forehead, to visiting churches that had a history of healing the sick. As I reflect on those experiences, I simply see a parent, an advocate with resolve searching for a remedy or a solution to improve her child’s health.

My journey was full of disappointing experiences at that time. But my mother was my biggest advocate, and nothing was off the table.