@LungCancerFaces made me aware that she’ll be moderating the next LCSM chat this Thursday 3/12/15 at 5 pm PT, 8 pm ET.
The topic for this one will be: “The Lung Cancer Advocacy Dilemma: Bridging the Smoking History Divide.”
And it is a difficult topic, especially for someone like me, who’s mother likely suffers from SCLC because of her smoking history.
One thing I noticed pretty quickly when getting more familiar with the topic and its community was, that most bloggers (at least the ones I could find) were non-smokers. I completely get that. In non smokers, a disproportionate amount is younger than the average LC sufferer and likely more tech-savvy . There will also be a greater sense of injustice and defiance in fighting back. But why is that?
Again, I think it goes back to the stigma and the false belief that if you smoked, you somehow deserve this and likewise I think people are apprehensive of (especially) online abuse from people telling them that they brought this onto themselves (whether or not justified, I can’t blame anyone to think this is a possibility).I do think smoking and class/access has a strong link, so someone who’d be a typical smoking related cancer patient right now would be less likely to know how to find resources or how to use the internet as a platform. But I also believe there may be other factors at play here and as I am still fairly new to this, these are just guesses that I have and anyone who knows more may jump in and correct me if I’m wrong:
My understanding is that the way the illness progresses has an awful lot to do with the type of lung cancer you end up having. In my mothers case, she has SCLC, a very rare (only 17% of sufferers get this one) and aggressive form, which also responds badly to new therapy approaches and where little progress has been made in general. SCLC, or so I read, is most common in smokers. Due to other smoking and general health related issues combined with the quick progress this type makes, I just find it hard to believe that someone who suffers from this finds strength to get involved in the lung cancer community. My mother at this point is sleeping most of the day, finds it hard to eat and can’t read a book because it tires her too much (and we only found out this month). There’s no way she’d be in any shape to get out on a platform and talk about lung cancer from a smoker’s perspective. And she’s one of the younger ones as well, as age will be another big factor at play here.
On one community blog I read something that resonated a lot with me (and if you are or know the author, please link me to them!):
They drew a comparison between the stigma that smokers suffer from and the stigma HIV patients had to fight, as both diseases are perceived as self inflicted.
It was pointed out that the biggest difference was that HIV patients tended to be a lot younger and more savvy when it came to build and occupy a platform, which has not only led to a change in public perception, but also in research and funding, making it now a disease that can be managed with minimal viral load and a comparative life expectancy of someone not infected (good access to healthcare provided). With Lung Cancer, we don’t have that just yet, and the patient advocates we do have (and who do amazing work!) tend to be non-smokers with NSCLC so there is a risk of focussing on one specific patient profile. This may be less relevant to research results than it is for people suffering from these types to find people with similar experiences, nevertheless I believe this is a risk worth taking as their relentless campaigning has already brought many advancements in a short space of time.
What’s needed is encouragement for patients and relatives and friends to become advocates regardless of their smoking history. Smokers deserve care and treatment the same way everyone else does. As I have pointed out before, the causes are many fold and not black and white. A smoker may get LC regardless of their history or because they have been exposed with another carcinogen. And even if it was smoking: I would argue that most of us do things we know are bad for us: we drink, we over eat, we consume processed foods of questionable composition, we don’t exercise enough, sleep too little etc.
So if I was to suggest something to help bridge the gap between smokers and non smokers in the community it’d be this:
Non-smokers: continue your great work, the results we see are in large parts due to you. And don’t forget to encourage those who have a smoking history to tell their own stories. More exposure, more campaigners will lead to more treatments for everyone.
Smokers: Speak up. Your stories are worth hearing. Don’t fear the stigma, you deserve to be heard and helped the same as anyone else.
So if you have the time, please check out the #LCSM hashtag on Thursday and contribute. Get your stories out there!