The Stigma of Cancer

I know I have addressed some of what I will be bringing up here in previous posts. However, the whirlwind of emotions I am still experiencing leads me to believe that I still need to chew on this for a while. As I said before, picking up a million little pieces is going to take time and what I had not realized initially, is that I won’t be able to put the pieces back exactly how they were. My life will never be the same with cancer and I will need to redefine myself as a result. It will soon be 2 months since I received my diagnosis and it is still very difficult for me to say the words out loud “I have cancer”. I am so grateful for the internet, email, texts, and Facebook for having enabled me to let most people know in writing that I had this awful disease. When I have to look at someone in the eyes and tell them I have cancer, the words barely come out of my mouth and I end up whispering the words almost in shame. Just saying the words feels like I am exposing a dirty secret.

I am mad and pissed that my hair is still falling. Only 15% of the people on this cocktail are supposed to lose their hair – why me??? I can’t say that I have experienced much anger since my diagnosis, it is not really in my nature and personality to get angry, I would rather roll up my sleeves and do what I need to do. I would much rather be productive than let anger overwhelm and paralyze me. But this hair thing – yes I am angry because as long as I have hair I can hide this f*%$’n cancer. I was under the impression that everybody “knew” about my diagnosis but I was surprised to talk to 3 different people this week who had no idea and they all said “but you look so good” (I understand the good intention) but what is that supposed to mean? that if you have cancer you will look like shit, you will look ill and weak? I am angry at my falling hair because when it is all gone then there is no way to hide this dirty little secret. Only if I was a man or if I became a muslim and started wearing a hijab then I guess I could still go incognito…. If you have diabetes no one knows, if you have a chronic kidney disease no one knows, why does cancer have to be such a “public” disease that everybody can see?

I am wondering why there is such stigma and shame around cancer. There are probably many answers to this question but here are some thoughts. We are trained to look for cause and effect and understand why things happen.”I fell and I broke a bone”, “I eat poorly and I have high blood pressure”. We try to figure out what behaviors and lifestyle could have brought on our diagnosis. Part of me actually feels kind of  lucky that I do not have lung cancer so that people won’t ask me (or assume) that I was a smoker, I feel lucky that it is not skin cancer so that people can’t comment on me not protecting my skin enough when I was in the sun, or that it is not anal cancer so that people won’t ask me if I was having anal sex. There is a preconception that behaviors and lifestyle can bring on this disease. I think this gives people a sense of control, if they know that certain behavior and lifestyle bring on a disease they will do their best to avoid them. In the case of colon cancer, there are very few risk factors and before I was diagnosed, I met none (older age, being African-American, history of polyps, inflammatory intestinal condition, family history of colorectal cancer, low-fiber high-fat diet, a sedentary lifestyle, obesity, and smoking or heavy alcohol use). So the next thing that is assumed is stress. Then I must have been a “stressed person”. Sure I have some stress but who doesn’t, what mom doesn’t, what working mom doesn’t? As I explained in a previous post, before this diagnosis, I was exactly where I wanted to be in my life and my stress was minimal. I know that I did not bring it on to myself. So what if cancer is random and hits like lightening? Then it makes it even more scary because anybody can be hit at any time, no matter how healthy, fit or zen you are…

I would say that in our society, health tends to be associated with goodness, virtue, and success and illness with vice and failure. I always prided myself with “never” being sick, always refusing the flu vaccine because my immune system was so strong – and now, my falling hair threatens to send me on the vice and failure side, on the “sick” and “ill” side. The idea of being bald makes me sick to my stomach. Every time I think about it, I step on a landmine and catch myself in an uncontrollable sob. Cancer strips you of your identity and gives you another one – one that you don’t want, one of a “patient”, “someone who is sick”, a “thriver”, a “fighter”, or a “previver”. That is not me and not who I want to be but I have no choice, I am and I have to be. I keep reminding myself that people will see me the way I project myself onto them and this is where I need to make peace with having no hair and find a way to use it as a strength, not as a weakness.

My husband was actually able to make me laugh about this (big exploit!). He brought up my sister who shaved her head in my honor and will have to deal with people’s comments. I responded that it was easy for her because all she has to say is “it’s not me, it’s my sister” and my dear loving hubby just replied “well when people make a comment just tell them it’s not you, it’s your sister” lol – why not?  Love you Fré xxx

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3 thoughts on “The Stigma of Cancer

  1. Cancer, regardless of the type, should not be thought of as a dirty little secret. In fact it isn’t a secret at all. It is the worst thing that plagues our society and you are not alone. Many of the people you know, unfortunately, probably already have it and don’t even know it. Please don’t feel you have to hide the fact that you have cancer. Don’t live in shame. Your hair may be falling out, but you are winning! Celebrate those incredible numbers and focus on “NED!”

  2. Le cancer, la perte des cheveux, font certes partie de ta vie maintenant (temporairement, on s’entend!)… Mais, ton identité profonde, ton âme, tes désirs, sont bien là, en toi, prêts à rejaillir. Je les sens, je les entends, dans tes fabuleux écrits. J’aime te découvrir dans ta vulnérabilité, belle Rachel! Je te souhaite de poursuivre avec autant d’honnêteté, de compassion envers toi-même et de courage, cette exploration intérieure, au-delà des stigmates comme tu les nommes ci bien. J’aime à me rappeler les sages paroles de Pierro : peu importe que tu perdes tes cheveux, moi je sais qui tu es, à l’intérieur. Pour toi qui m’as fait découvrir Françoise Dolto durant nos études universitaires, je me dis que dans ces moments où tu souffres du regard que les autres peuvent porter sur toi, tu peux toujours te rappeler cette parole vraie, de Pierro. Et le beau fou-rire partagé avec colorful Sebas, qui fait oublier le desaster ;-). Bisous du Québec automnal, plein de couleurs et de fraîcheur! Tu me manques! Annie xxx

  3. Rachel I’m sitting here reading this and had to share with Ron. You made both of us laugh out loud. I think that is a perfect response.

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