Last week I received an inbox message on Facebook from a Respect the Rays reader which sparked a thought….and with that thought comes this blog. I think the reason ideas were generated from this correspondence is because it was not the first time I had gotten something along these lines.
Speaking of lines….Lines. Dividers. One side or the other. A border that separates. A boundary. What am talking about? I’m referring to the feeling that some readers perceive there is a “cancer club” in the melanoma world….and that those who have not experienced melanoma first hand, feel they are crossing a line into an already formed club, of which they do not belong.
I was struck by this, as I never really thought about the possibility of Respect the Rays being a “cancer club”. But when I read the message, and also remembered some past talk of followers saying they “only have basel cell carcinoma” and don’t feel they belong here…it all came together. There is something going on here, and it is deserving of some attention.
Here is how this started…
“Hi…..I’ve been writing and then deleting a message to you for some time. I’ve been trying to figure out what to say without sounding like a stalker. Lol. My name is —–;I’m going to be 30 tomorrow. I live in NY and have 4 children ages 3 to 10. I found your website when I Googled “melanoma survivors”. I read quite a few blogs, but yours stuck in my mind, I’m not really sure why, and I’ve been (secretly) following you on Facebook ever since.”
Secretly? Why secretly? I write her back. She writes me back. And I ask her if I can ask her some questions for a possible blog post, because I think this topic actually represents the state of things in the melanoma world currently. I’ll explain. Or try to…..
When I first created Respect the Rays, the idea was to raise awareness about sun safety and melanoma via educating those lacking the facts about tanning and this disease…in particular, teens were going to be my focus. After Respect the Rays took off growing, it became clear that it was not longer going to be a single faceted entity, but rather a place offering a multitude of things: support, education, inspiration, etc. It also became apparent that most of those interacting on Respect the Rays were those directly effected by melanoma.
Back to the LINES visual….here’s the divider….you have either had melanoma or you have not. You are either in “the cancer club” or you are not. It is either before (the time to get educated, become very aware, change behaviors if need be, spread information learned, teach others) or after (the time you are diagnosed, where you can not change the past). What I’m trying to say here, is that it appears there are far more people out there, coming together, who already HAVE melanoma….and few that come to RTR to learn ABOUT melanoma. To me, it seems there are some analogous themes here, some kindred topics- not enough PREVENTION and too much DIAGNOSIS!
Let’s have a peek into the mind of someone who feels like an outsider (AKA, not having a melanoma diagnosis), but want to hear what is being said in the melanoma world…
Q: What led you to Respect the Rays?
A: I’m the kind of person who likes to research a topic extensively. Being concerned with my elevated risk due to tanning, I decided to read melanoma blogs to see what people’s backgrounds were with the sun before their diagnosis. I found your story on a website when I Googled “melanoma survivors”.
Q: What are your feelings about following RTR without having had melanoma?
A: I follow RTR in private. I have not “liked” the page because I feel like others may feel I do not belong there.
Q: Why might you feel that way?
A: It seems like everyone on the page is either a survivor, a fighter, or have had their lives touched in some other way by melanoma. I feel like I would be intruding by joining the page. I feel like people would “look” at me as an outsider sitting on the side lines thanking God that I am not in their shoes.
Q: What would make you feel more comfortable on the melanoma pages?
A: I think my discomfort is something that is in my own head*. I feel like the members of these pages are so supportive and kind, that they would welcome me with open arms. Out of all the blogs and pages I have read, yours is the one that sticks with me, the one I keep checking. It’s the best of both worlds. You keep it real by updating on your own health and how you live your life with melanoma, but you also keep it real by updating what’s going on in the medical world. You raise awareness and post links that other people may never come across on their own. You post products and clothes that make your life easier and safer. You’re a hero in the melanoma community because you share your wisdom and resources. You blog about yourself, but it’s not all about you. That’s what makes me feel welcome on Respect the Rays, that it’s not all about you. You see the greater picture; you see a way you can help raise awareness and that speaks to me. That makes me feel at home.
*note: I have received various emails/messages from people talking about this “in my own head” feeling.
After reading these honest responses to the above questions, and thinking about the others who have written me in the past, I am left wondering what we can do to shift this…to scoop with the widest net, those who need educating, those who can learn and in turn prevent. Because isn’t prevention what we are all rooting for? Dismantle the perceived “clubs”, the invisible yet felt lines, the “I don’t belong” theme…and create a catch all for education, prevention, awareness, and support.
The definition of prevention is as follows: the action of stopping something bad from happening.
And THAT is what we want!
As I said to the woman who wrote to me, the one who inspired this blog post, “The dream is that someday, it will ALL be about awareness and have no personal stories of cancer!”
Thank you to the brave woman who reached out to me….and thank you to ALL who have reached out in the past. You create thoughts, generate ideas….make change! Keep it coming!
This Must Be the Place by The Lumineers