Pain, Perception, and #Pinkification
This is my first blog post posted on WEGO. I am thankful for this place where I can learn from other health activists and advocates. I not only learn what works for other health conditions, I learn about the other conditions themselves.
Brave BC heroes
Alicia Staley is one brave lady. First she faces down the monster of breast cancer (BC) twice. And now she uses such a politically incorrect word as “pinkification.”
One of my grandmothers beat breast cancer twice. It must be a special badge to earn. Decades ago, she became an early patient advocate through a program called Reach to Recovery. She fiercely encouraged women to fight the disease and fight to get as much of their lives back as possible. It was like a calling from God to her: she had conquered BC and she wanted to give that to other BC patients.
I never asked my grandmother what she thought of the pink movement. When it began, it must have felt gratifying to see people paying so much attention to a cause so dear to her heart. Maybe it gave her hope that one day there would be little need for Reach to Recovery visits.
Pink eclipse envy?
Of course, Alicia never said that she wished we could go back to a time when there was no breast cancer awareness. She only said that she wishes we could go forward to a time when there is awareness of other diseases, too. In the realm of awareness, cancer seems to eclipse all other diseases and breast cancer eclipses all other cancers.
Does it really matter? Isn’t this just a case of envy? Maybe other diseases really aren’t as important as breast cancer. BC is just more sad and dangerous than other diseases. At least that is the way it has been stated to me before. I have a unique way to respond to this claim. If breast cancer awareness is a 10, then there are some diseases that are close to 1, such as Rheumatoid Arthritis (RA). Does that do any harm?
RA patients have an increased risk of contracting many other diseases, including cancer , but they are trained to ignore symptoms. I actually know several RA patients who have survived cancer and made bold comparisons (link to an example on my blog) with their RA. None of us would “rather” have any of these diseases. I’m just exploring the idea of whether it matters that RA awareness is so dismal. There are many devastating statistics that I could quote about RA, but one story shows how destructive the lack of understanding of RA can be.
Very brief explanation of RA patients and pain
Let’s interrupt the story to explain how RA patients typically manage its constant pain: suffering silently is almost universal. Here’s why: People with RA compare RA joint pain to things like injuries and broken bones or sometimes even childbirth, but RA damage is often invisible to bystanders. Many RA doctors refuse to treat pain or claim that RA pain cannot exist without visible evidence (redness or swelling). When RA patients mention the symptoms of their disease, their pain is usually minimized by well intentioned but misinformed friends who confuse RA with arthritis. RA pain varies a great deal, but the scenario I’m describing is a typical one. (For more info on distortions about RA pain, see this post and comments pages.)
What does RA pain have to do with breast cancer?
One man told me a story about his journey toward enlightenment regarding his wife’s RA. I thought his story was so important that I gave him two posts on my blog to tell it. Mike’s wife had RA that was unresponsive to treatment. She did not get much relief. Unfortunately, she was unable to communicate to him how much pain she had. Deb learned to live with that pain in the typical RA way: quietly. She learned to separate her thoughts from her pain. She learned to answer, “Fine” to anyone who asked how she felt because it is easier than trying to educate the world while you are sick.
Deb was not fine. She had a lot of pain. And pain is a sign that something is wrong. But, being a typical RA patient, Deb did not make a big deal about it. Here is how the two part story of Deb ends: “Deborah passed away from breast cancer in 2008. She and I believed that her RA pain masked what she might have noticed otherwise. A 5 cm tumor is considered very large and dangerous. Deb’s tumor was 10 cm by the time she was diagnosed.”
It’s true that Deborah died of breast cancer. But in some ways she also died of lack of RA awareness. She had been trained by RA to ignore pain and just live with it. Only she could not live with it forever. She eventually died with it.
Link to the story of Deborah as told by her husband Michael on RA Warrior: Living with a Spouse with Chronic Illness, part 1
-
Comment by Nicole on October 6, 2010 at 10:31am -
Thank you for sharing this awesome blog Kelly!
I think your point about RA was well made, and I learned so much from this post. It's always heartbreaking to hear a story like Deborah's. I think that breast cancer has already made leaps and bounds in awareness, and if other conditions, like RA, could get more attention it would help open up the spotlight that breast cancer is under.
-
Comment by Kelly Young on October 6, 2010 at 11:22am
-
Thank you, Nicole. I like your analogy of opening up the spotlight. No one wants to steal their awareness; we might want to share it though.
-
Comment by Ellen S on October 6, 2010 at 11:32am -
Kelly,
Thank you so much for posting this here. FYI - I will definitely be tweeting and sharing this on FB too as you eloquently made some truly wonderful points that are SO worth sharing.
I hear stories like this so often. Mostly they are PM'd because devastated patients and family members either don't know how to share their story, or are too raw to do so. Sometimes we hear these stories only months or years after the fact, but at least it's becoming more acceptable to talk about the negatives of a disease like RA and autoimmunity without it being considered whining or complaining - - or envy. Slowly I think our society will begin to see many of your points from a different perspective. It will take time though... In the meantime, it's Health Activists like you Kelly, who will be leading the charge! Personally, I'd like to say, Thank You so much. <3
-
Comment by julie on October 6, 2010 at 12:08pm -
Kelly, thank you so much for this insightful and thoughtful blog. I only hope that some day, rheumatoid arthritis has as much awareness as breast cancer, and that both diseases can be eradicated. I thank you for your work on RA Warrior and other sites, and in being such a great advocate.
-
-
Ellen,
You're right that we tend to hear many more stories like this privately. Hearts are poured out in FB messages or emails. I was so grateful that this particular family was ready to share after the fact, like you say.
I think we might have to make some of our pain more public to get the awareness that is needed. Hard.
-
Comment by epatientGR on October 7, 2010 at 6:22pm -
Kelly is right, there are so many diseases that have no voice, even within cancer itself, lung cancer, pancreas cancer, larynx cancer are devastating and deadly diseases. Exactly, because they are deadly patients do not hve courage or power to scream about it. On the contrary, breast cancer had already twenty years ago advocates who knew the ins and outs of "marketing" and placed Breast Cancer in the media. This was good because it raised awareness, that was needed at that time. But do we still need it? Or do we need other things e.g. to find a cure for the disease or advocate to remove factors that are suspect of favouring breast cancer?
I am also against the pinkification that now has started to flood Europe too. What pink bracelets and pink lighting will offer towards eradicating breast cancer? absolutely nothing for the cause but enough marketing perks for those promote them.
In this respect, I voted for National Breast Cancer Coalition's campaign |End |Breast Cancer by Year 2020 http://www.stopbreastcancer.org/2020/about-this-deadline.html that has a meaningful purpose even if it might not materialise by then. However, having met last year the really awful team of the NBCC ladies, I am sure that they will do their utmost to reach their goal. Another worthwhile, BrCa campaign is the think before you pink by Breast Cancer Action www.bcaction.org. This year they continue their successful campaign of last year to stop the use of growth hormone rBGH in cows, as this hormone is accused to be oncogenic.
Taking in consideration these examples, RA advocates have to figure out how to widespread their voice. To this purpose they should rally with patient orgs around the world for an intl RA org. Is there such one? Now in our global village it is better to have a central communications strategy, adapted for local conditions so the same message goes around. BrCa had the chance to have early enough powerful orgs (they are also the richest among patient orgs) who used professional marketing and communication strategies with great success. Why not be inspired by their example and best practices?
-
Comment by Alicia C. Staley on October 12, 2010 at 12:57pm -
Kelly - Thank you so much for this post. I'm honored that you've jumped in and added your voice to this conversation. I'm also touched you think I'm brave! I don't think of myself as brave - just persistant and scrappy at times!
-
-
Kathi, I've made the suggestion about following their good examples before myself. However, I've not done the research you have. Thank you for this thoughtful reply.
-
-
Alicia, Thanks for helping make this a positve space - even to discuss hard things. You know Lucille Ball said, "I'm not funny. I'm brave." When you have courage to be yourself regardless of the popularity of it, it encourages others to raise their voice, too. Whether its funny or scrappy. (Lucy had RA.)
Comment
© 2012 Created by Susan M..
You need to be a member of WEGO Health to add comments!
Join WEGO Health