Telling others you have a problem, however big or small it may be, is always difficult. I have found the only somewhat comfortable way to tell someone I have breast cancer is if it comes up organically in the conversation, which happens almost never. Even if I were in an innocent conversation about breast cancer with someone, it would be awkward. Usually by the point I get around to telling someone, I’m knee deep in small talk and then it just becomes a really bad transition. “Oh, by the way, I have breast cancer”…dead silence….”Oh, I’m so sorry…”. And the recipient of this information is really sorry, they feel really bad. I feel terrible that I’ve brought down the conversation and now not only do they feel bad, but they’re usually stressing out about what to say and how to help.
I’ve gone through many stages of sharing and have seen the pros and cons of “letting people in”. When I was first diagnosed three years ago, I really wanted people to know what was going on, but also didn’t want to make a big deal about it (mistake number one…it is a big deal and people will make a big deal about it if they know). I had a mastectomy and chemotherapy, so it would have been difficult to be too secretive (I was not a fan of wearing wigs and my two favorite wigs were drastically different styles, so somewhat of a dead giveaway that I was wearing a wig), but certainly there are things I could have done if I really didn’t want anyone to know. I told a few people and discovered it was somewhat exhausting to tell each person individually, so I kind of just stopped telling the rest of my friends and family, especially when my hair started to come back and I just wanted to move on with my life.
I definitely learned some things about human nature and what to expect from other people during my first go around with cancer. I noticed people would assume I was doing some type of treatment or had a certain prognosis because they knew someone else with breast cancer. Looking back, I should have known that we all like to group people into similar categories and make assumptions based on someone’s characteristics, it really just helps us organize all of the information we are trying to process. Growing up as an extremely tall child, people assumed I would play basketball, which I did and hated every minute of it. It always irritated me that no one ever asked me about my true athletic passion, running, everyone just wanted to know how my basketball career was panning out (umm, not great), but my body habitus definitely fits that of a basketball player, not a runner, so now I can see why the basketball questions came up so often. While it seems to make sense to group others into categories so you can “figure them out” and possibly even try to understand them without directly talking to them, many times you jump to invalid conclusions and assumptions. I found myself getting really frustrated by these assumptions of my condition, but for some reason I could never quite articulate what I was feeling. Then, about 6 months after my original diagnosis, another lady with breast cancer articulated it perfectly, “Everyone with breast cancer is different”. So obvious and simple and probably applies to just about every disease, but so true and it just made me feel so much better to hear it.
Throughout my cancer journey, I have been truly amazed by how much people care and want to help. Maybe it’s because I tend to fall on the aloof, individualistic side of the spectrum, but I am constantly surprised by the willingness of people to donate time, money, and positive words. It makes me regret the times in the past when I’ve had friends that have been sick, some having major health problems and surgeries, that I didn’t do more to comfort them. It also reminds me of what I can do in the future to pay back all of the kindness that has been shown to me. Part of receiving help though, is also receiving advice. I periodically get treatment recommendations. I understand this is given with loving intentions and people just want to give you the lastest information they saw on TV, heard on the radio, or read on the internet. I’ll admit that sometimes when people are even just innocently asking about my treatment I get a little overly defensive. “Don’t you realize I am constantly meeting with a great medical team that not only has the best resources, but is also made up of exceptionally intelligent minds that live, eat, and breathe cancer?” or “Why is it my job to keep you updated on my exact treatments?” I’m embarrassed to admit I’ve had those thoughts, but I think part of my journey has been trying to understand why questions are asked and comments are made and also realizing I might be getting a little over emotional when I’m trying to process them. I know curiousity comes from a place of love and concern and I feel everyday I get better at responding to it. One thing that comes up a lot is my diet. Am I eating enough fruits and vegetables? Am I eating too much sugar? Am I making sure everything is organic? It makes sense, fruits and vegetables do help prevent cancer and too much sugar and artificial ingredients probably play some role in all cancers (although I’m not sure the extent has been scientifically proven). My response is that yes, I try to eat fruits and vegetables and decrease my sugar and artificial ingredient intake, but I also need to function without going crazy about what I eat. For me, cancer has had a lot of similarities to pregnancy. Chemotherapy and radiation have given me the constant underlying nausea and fatigue that pregnancy gave me, accompanied by a constant craving of carbs and sugar. So, I guess when you are already feeling a little nauseous and fatigued and really only craving carbs, it’s difficult to listen to dietary advice. Yes, I realize I should eat fruits and vegetables, but I need to maintain some sanity also.
I’ve been on the other side of this, the person who didn’t have cancer, and I always felt uncomfortable, like I was saying the wrong thing or being insensitive by not saying anything. As the patient I can tell you, there is no perfect thing to say. Any kind words help, they don’t even have to be words of sympathy or related at all to cancer. Some people do definitely have a gift for words of comfort and showing support and that is definitely appreciated, but I would never judge comments made by people or lack there of. I think all anyone wants in any situation is to be treated fairly. I get asked a lot if I’m comfortable talking about cancer. The truth is, yes I’m comfortable, it pretty much consumes my life and is always somewhere on my mind. I definitely want people to know what is going on and feel comfortable asking. The sadness is pretty much a constant for me, it’s not like by bringing it up I’m all of a sudden going to remember, “Holy buckets, you reminded me about the cancer! It had slipped my mind”. But, I can’t say that I feel good talking about it either, it’s hard to see the sadness in other people’s eyes and hear the sadness in their voices.
I think probably the main reasons people are uncomfortable disclosing their physical ailments are the identity and pity factors. As soon as I tell people, I feel like I lose a little part of myself and get replaced by the face of death and sickness. I also feel terrible accepting people’s pity. It’s not that I feel unworthy or guilty, I just feel like everyone’s struggling with something and at this point, I feel pretty normal and healthy. I feel like there are a lot of other struggles young women can have; pain, autoimmune diseases, and the ever-stigmatized mental health and reproductive issues that unfortunately many are still embarrassed to talk about. All of these things are probably way more disabling than my cancer is at the moment, but here I am accepting all of this pity. Not that I’m in denial of what can and will likely happen when the cancer progresses, but sometimes in the moment I wonder if I’m overdramatizing my situation. The other concern I have with sharing my story is the scare factor. My initial diagnosis, ductal carcinoma in situ and early stage breast cancer, is really common. Chances are some of the people reading this blog will be diagnosed with some form of breast cancer and I certainly don’t want to scare people with my rare doomsday tale of progression. Most people get diagnosed with breast cancer, go through a variety of treatments, and it will never come back again. They just never share their story of survival, I probably never would have shared mine.
Ultimately I wanted to share my diagnosis because there are just so many people that I felt might want to know. I would want to know if they were dealing with this. My ultra-private husband wondered why I would tell anyone other than immediate family. I can certainly understand why one would not want to share this and would definitely respect that. But, for me, there were so many people, my co-workers, extended family, friends and neighbors, old friends from high school and college; that I just didn’t feel right not telling. The “secret” of the diagnosis felt like a big weight on my shoulders whenever I was talking with someone. I couldn’t be completely present in the conversation. Again it’s a personal decision and everyone’s different, but I appreciate when others share their struggles and thought I would do the same.
My Life with Stage IV Breast Cancer 