I’ve been quiet on my blog lately. It doesn’t mean I am not writing or thinking about our cancer mess. It certainly doesn’t mean that I am feeling so great that I don’t need to blog anymore. Nor have I decided to look the other way. I don’t think that will ever happen. One thing I can say is that I have become tired and disappointed. There’s a lot on my mind and a lot of it isn’t pleasant. It’s partially out of fear and frustration, but also out of anger.
I am feeling very angry about so many things. Injustice. Ignorant people. The fact that I will never be done with cancer. Feeling pressured — by time, people, expectations (including my own). Feeling out of control. And so many other realities about being a cancer patient.
It’s as if I have reached a point where I have decided to switch pills and momentarily take this one instead:
Recently I’ve been re-reading my blog. I have no regrets about the things I’ve shared here. It has helped me, mentally, to express myself, and I hope that you too have found some comfort in knowing you are not alone in your suffering and pain.
What is my goal, really, when I write about breast cancer and our culture? I’ve already said it’s therapeutic for me to express myself, and I do appreciate sharing a connection with other patients. But my other goal has been to try to educate and influence people — to help them by trying to create change so their future cancer experience is better than mine. But despite all my efforts — and immersing myself in the pain of dealing with these topics in writing — I don’t feel that people are paying attention enough. When I see them look the other way, I get discouraged to continue. (Receiving support from doctors and through treatments is very important, and I’ve gotten that, but I find survivorship carries a different set of challenges and it’s important to receive support during this stage too.)
This has been especially disillusioning and hurtful when some of the people looking the other way are those who are supposed to be close to me.
For instance, I’ve been thinking about all the requests I’ve shared on social media and on this blog asking friends and family to contribute to research — and most people have ignored my requests. My most recent request was related to the “#KissThis4MBC” campaign, where Novartis is donating $10 to metastatic breast cancer research for everyone who shares a photo of themselves with the hashtag #KissThis4MBC. We all know how much people like to post pictures of themselves on their social media pages, so I thought this would be a hit. Easy to do. All I asked friends and family to do was to include the hashtag, and yet, less than 10 people did it out of hundreds — and this was mostly only after I started tagging people and asking why they hadn’t done it. (I know, I know, some could have missed my post. Yet when I post a new picture of myself or a cute video, tons of people responds with a “Iike.”)
My post didn’t even get acknowledged by most people, not even when I asked twice. So as I was staring at my screen, getting ready to post my own photo, I decided not to bother (at that moment).
I’ve been thinking about who I am really helping by advocating for change and more education. The truth is all patients who advocate are mostly helping those who have NOT been diagnosed with the illness yet. We’ve been through the shitty experience already. The damage has already been done in our bodies and in our minds after cancer. A lot of the progress will help those who will be diagnosed in the future. So, that’s reason for me to not stop advocating. I would like to contribute to change in any way that I can. I know that my experience was easier than it would have been, let’s say, 20 years ago, thanks to those who advocated for me before my diagnosis.
Yet, it feels so disappointing not to get the engagement you want from those closer to you. I’ve already accepted the fact that most people don’t want to deal with cancer unless they absolutely have to, but I expect more from those who know me.
People talk about how they don’t know what to do to help cancer patients. They say that they often feel helpless. But then, when a simple opportunity presents itself, they still don’t do it. (For those who did share their photos, thank you!) I get that people have a life to live (so do I), but my request only took a minute to acknowledge. And it’s for me, your friend/loved one? Regardless of what your beliefs are — such as “they’re hiding the cure” or “this is a bullshit PR campaign” (it isn’t!) — do it, because this is our hope and the act of participating will mean something for everyone, including you.
Why won’t they do it? What is the reasoning? I really want to understand so I can accept it and move on. Are people so petrified of the word “cancer” that, even when they read it, they immediately look the other way without realizing they could be contributing to making things better for someone? I can’t help but to take it personal. It makes me feel like they don’t care if I die from this disease.
I’ve been thinking about this worst-case-scenario. I imagined people writing on my social media channels, saying things like “you will be missed” or some other shit. And it made me even angrier. I thought “shut the fuck up” (something I would say from my grave, if it were possible); “you should have shared that photo on your profile like I asked you to. There would have been zero inconvenience for you, because you’re constantly on social media anyway, posting photos of every move you make”. All you had to do was add the hashtag, #KissThis4MBC. That’s how you show you care, not by writing on my wall when it’s too late, or sharing a pink ribbon – that won’t do a thing!
For a while now, I’ve been feeling like I am locked in a room with a group of people going through the same frustrations as I am, screaming for acknowledgement, and no one hears us — until they have to enter the same room themselves, where they too won’t be heard. And this is why we are where we are today when it comes to cancer research. Makes me also question for the millionth time all this “awareness” that Pinktober is supposed to bring.
1) Whether you’ve been diagnosed or not: Have you ignored a cancer-related social media message or article message shared by a loved one who has the disease? If so, why? (No judgments here)
2) For those who have been diagnosed: Have you taken the “FUKITOL” pill too? (possible diagnostic reasons: sick of a job or a relationship)?
3) If you are a blogger or any other type of advocate, do you often feel unheard? If so, how do you cope?