The Advocacy Roller Coaster

In March of 2017, I worked alongside a handful of other skin cancer survivors to help launch SkinCancer.net. I have shared my stories (not just my skin cancer stories, but also my life stories) with our online community for the past several years. I written about my diagnosis and treatment, and I have discussed prevention. Most significantly, I have shared the root causes of my desire to be tan and accepted. It has been my pleasure to do so.

I hope I have comforted some and helped many. I believe that my journey is not unique but rather represents the path that many have taken or been forced to take. This disease is holistic and affects every part of my life just as it does for so many others. As a contributor and moderator, I have loved advocating for both present and future generations.
I have learned a lot along the way. I have been overjoyed and, at times, disappointed and sad. Skin cancer advocacy can be a roller coaster. But what have I learned? Let’s find out.

Unexpected wins on my skin cancer journey

I have been pleasantly surprised by many of the advances in skin cancer treatment, especially as it relates to melanoma. I have read about immunotherapy treatments that have been effective and have extended lives. As someone who has raised money for cancer research, this has been especially satisfying and brings me great joy. I feel like I have made a difference.

I am very happy about some legislative successes in my home state of New York as it relates to children and underage teens not using tanning salons. The lobbying and emails have made a difference. Engaging in this process has felt empowering. It’s good to know that speaking reasonably and informatively with elected officials can change perceptions and help these children later in life.

I have been overjoyed to see many younger people taking precautions when it comes to sun exposure. I will never forget the time I overheard an elementary school girl encourage her uncle to wear sunscreen on a hot summer day. This gives me hope for a brighter future when it comes to prevention and diagnosis. I will gladly bare my soul online if it helps even one young person.

The hard realities of advocacy

There have been disappointments, too. Most notably I don’t understand how bright and educated adults can be so uninformed about skin cancer. Just the other day, I was speaking with a photography friend who told me how important it was to get a “base tan” before going on vacation. There was little understanding that any sort of tanning is the result of sun damage to the skin.

The hardest part of this journey has been the fact that I still see many young people with bad, blistering sunburns. I often see families leaving the beach just as I am arriving in the late afternoon or early evening. I know they have spent hours in direct sun and I am concerned about their immediate pain and that first hot shower they take, But most of all, I worry about the damaging, cumulative effects that years of tanning can bring. I really hope that parents of young people teach them early about being safe in the sun.

My biggest concern is that young people grow up knowing their worth and value are not tied to their appearances, their skin tones or to being tan. I want them to make good choices based on the understanding that internal character is a better measure of a person than outward looks. I want them to work on who they are on the inside rather than what they look like on the outside. Like I often say, “read books instead of tanning for looks.”

What has skin cancer taught you?

Many years later, I am still learning. What have you learned along the way?