Thursday, January 09, 2014

Coming Out with Cancer

I was at the grocery story the other day and caught sight of an acquaintance I hadn't seen for over a year. I started to walk across the store to say hello, when I froze. I realized that she had no idea about my diagnosis, and I would have to decide whether or not to jump into that minefield when she asked how I have been over the past year.

So instead I walked the other way.

Meeting new people is sometimes a bit awkward for me now, since I never know if or when I should drop the "I have cancer" bomb. I still have my hair, so there is no tell-tale chemo sign. Overall, there is really no external way to tell that I have anything wrong.

Yet, lung cancer has become an important part of my identity. There is not a day that goes by where I do not think of it. I have become active in the lung cancer community, and I have made new friendships because of it. It has profoundly affected who I am and how I think about life. So, like it or not, it is part of me.

I am not ashamed of having cancer, and I am happy to talk about it with people, but the initial coming out is wrought with uncertainty. Will I get the "pity face?" Will I get the list of things I should/should not eat/drink/breathe etc.? Will I get the awful silence that follows the exchange, "What stage it is?" "Stage IV." ". . . . . . . . . . " (That really happened. I wanted to say something to make her feel less awkward, but I couldn't think of anything, so I just sat there as she squirmed.)

There must be other people who feel this way, people who have an important part of themselves that is a somewhat touchy subject. Perhaps this is how members of the LGBTQ community feel? Perhaps people who have experienced a life-changing event feel this? There is no external marker to show that something big is going on, but it is there, and it is important.

I'd love to hear from others who have felt this way, if you woud be so generous to share your thoughts. And if I'm way off base, tell me that too!

I used to say that I wanted to live a hundred lives in my lifetime. This upside of this cancer journey is that it is helping me to walk in other people's shoes and see with their eyes.

There is the yin in that yang.

19 comments:

grayconnections said...

Yep, know that feeling. After 2.5 years, "I have lung cancer" is no longer at the front of my mind during all conversations, and I don't feel I must say something whenever I meet someone new or reconnect with a friend. Mentioning my lung cancer doesn't seem appropriate in some situations, because that inevitably shifts the focus of the conversation to me. Sometimes I just want to have a conversation about topics other than lung cancer.

Kimmywink said...

So true… When I run into someone from my past I say to myself, "should I ruin their day and make them think about their own mortality or just say yes, I'm married and no, I have no children."

I DO think by telling people that I have lung cancer, I have a positive impact on changing the perceptions of this disease. (Could be my ego thinking this.) So, I generally delicately tell people.

I've had a few long lost friends find my blog first. I think that would be hard to read. An in-person discussion can really soften the blow.

Sharon Larsen said...

I too never know what to say to friends from my past that find me online or I run into in person... "How are you?" "Well, I'm fine but I have cancer" sometimes I just don't want to go there. I think it is a case-by-case decision. I find myself thinking "do they really want to know?" I do want to help spread awareness of my rare type of cancer and feel it is an opportunity to educate people but at times, it's just too much! (I have a full head of hair too--I don't look like I have cancer.)

Tori Tomalia said...

Good point. I think that is part of my hesitation - the focus quickly shifts away from catching up, and it becomes all about me. I hope I get to the point where lung cancer isn't one of the first things that comes to mind in these situations! Thank you for sharing your thoughts.

Tori Tomalia said...

The advocacy side of me agrees, sharing my story can help reduce the stigma and spread information (one of the reasons I blog). You are brave, breaking the news to people kindly. I almost hope they know before I have to tell them, so I don't have to see the shocked expression. Maybe it gets easier with time. Thank you for sharing your experiences!

Tori Tomalia said...

You ask an important question with, "do they want to know?" A friend responded to me privately that he thinks most people want to live more authentically and have interactions that go beyond simple small talk. Sometimes, though, it is a lot to handle! Thank you for sharing your story here.

Beth said...

Sometimes, a little bit into conversations about academics with colleagues (which is mostly all academics ever talk about anyway!) I'll just say, "I've been dealing with a serious illness and that has slowed my progress." Academics are often quick to return to the topic of academics.

Even if the conversation ends up going further, somehow leading with "I've been dealing with a serious illness" seems to make the subsequent "I have lung cancer" less of a shocker. I think it's a good tool. It also makes it possible to silently arrive at a mutual decision to leave it at "serious illness."

I definitely make choices about how much energy and time I have. Do I feel like countering the usual ("You're so young/Did you smoke/I've heard cancer can be cured with nutrition") with the usual ("20 percent of women with lung cancer have never smoked/Some young people get lung cancer and we don't know why/I'm in a promising clinical trial")? If not, then it's "Sheesh, how ABOUT that polar vortex?"

I am a lesbian and I guess it is similar in some ways. It's something intrinsic to my identity, and yet invisible in everyday life (say, the grocery store). I would basically like for everyone to know and to just not freak out, but that isn't going to happen in every context.

Tori Tomalia said...

I think this is an excellent way to handle it. It gives them a way out if they like, or a gentler entry into further discussion than just dropping the Big C. I'm going to start using it!

"I would basically like for everyone to know and to just not freak out." THIS could be the mantra for the human experience. Know me, accept me, don't freak out about it.

Craig Blower said...

What you describe is exactly what I went through at the very beginning of my journey. I'm sure we can all relate. That was one of the main reasons I got the word out there as much as possible, as early as possible. Two weeks after my diagnosis I even gave the "inspirational moment" at my Rotary luncheon of 200 members using the opportunity to reveal my diagnosis but putting a positive spin on it. Starting my blog and posting it at various cancer sites also helped spread the word. It is rare now after 10 months that I run into anyone who is not aware and it is a much less of a concern. But it still happens and I don't hesitate to matter of factly bring it up but quickly change topics if the situation becomes awkward. I find the more open you are, the less awkward it is for the other person and once they know you are comfortable discussing it, they often will join in and ask questions.

Tori Tomalia said...

Thank you for sharing your story. I appreciate reading about your bravery in being open with people you meet. And thank you for introducing me to your blog - I just added it to my reader.

Kristin Baker said...

Hi Tori!

I don't have cancer, but I totally empathize with the constant decision about "when/how/if I disclose this thing about me that is a part of my identity and sense of self but will definitely change the way you look at me and color this and likely our future interactions..." I have rheumatoid arthritis (as you may remember) and some days I am OK, and some days I a stiff doorknob is insurmountable. So do I ask the work colleague I am walking to a meeting with to open the door and let them think I am a bit of a princess? Or do I lower my voice and say, "so, I suffer from a chronic joint disease..."

It does have to be case-by-case, like Sharon said but that is one of the exhausting parts of dealing with an invisible disability (that's probably not the right term in your case, but I find it helpful for myself). It's a constant negotiation with the world.

Tori Tomalia said...

Kristin - yes! You totally get it! And that sucks that you have to not only deal with the pain, but also the "explain/not explain" tap dance. I bet you get lots of, "but you aren't old, how do you have arthritis?" Thanks for chiming in!

Big Fire said...

Now, I look up to you more ....

Tori Tomalia said...

Big Fire, you are too kind. <3

Kathryn said...

I've always struggled with, "How have you been doing?," in and of itself. I think that, often, people ask the question in a somewhat rhetorical way. Sometimes they don't really want to be caught up on what has been happening in your world; they are just using it as a comfortable greeting to express some level of interest and acknowledgement before moving on again. It's sort of a small talk vs. genuine invitation to connect sort of thing, maybe?

I seek to be genuine and real with the people I connect with in my life. Because of that desire for being genuine, I want to answer inquiry into my well being in a thoughtful way that fairly represents where I am and how I've been doing. The dissonance between that desire and between people using the greeting rhetorically without meaning to invite that level of connection can be tricky for me to navigate.

I don't have lung cancer, but there have certainly been times in my life where I've struggled more with that sort of thing than others. I have struggled on and off with depression throughout my life, and during or after a particularly rough patch catching up with people has sometimes been tough. Some time ago I left an abusive partner, who also happens to be the father of my child, and he has done a number of things both before and since I've left to make my life difficult and complicated, things that have at times been crucial to at least recognize in order to have any understanding of my state or well being, but were still quite often difficult to share, or sometimes I was just so tired of sharing and catching people up and explaining, even though they were so much on my mind and so crucial to my sense of self and identity in that time that it felt inauthentic not to acknowledge them. I've come very strongly over the years to identify as both pansexual (being attracted to a range of people without regard to their gender identity) and polyamorous (which I still feel is crucial to my identity even when I am single or in just one relationship - I still prefer to have the freedom to allow myself to love others that come into my life if that feels the right thing to do), and I don't always know when to share that with people who knew me before I made that journey, or how, but it is an important part of who I am, and I sometimes find myself avoiding any interaction if I am struggling too much with that unsureity. Most recently I've struggled with adjusting to living in a new country, with loneliness, with language and cultural barriers, with grief over the people and the things and the opportunities and outlets that I left behind, and I've found that this has been a barrier to keeping up with people from my life before the move. I have often been struggling, but I don't want that to be all of what we talk about, or maybe I'm tired of talking about it because I've just recently caught another friend up, but I don't know how to just set it aside and still connect genuinely in the way I'd like with someone that I love and I miss dearly.

(continued momentarily - I had to break it into two parts due to character limit)

Kathryn said...

I guess that is all a long way of saying that, while I don't know what it is to have cancer and to face the things that you are facing (outside of what you write so candidly and so well), I can relate to the sort of awkwardness you describe.

I'd also say that while some people will sometimes greet friends they haven't seen in a while in that rhetorical way, there are also those who very much want more genuine interaction. If I were to run into you in the store - it's been nearly half my lifetime since I've seen you? - I would like very much to know how you really are, how you have been, what is important to you in your life now, who you have grown into, what your identity has come to be. If we were to run into each other and I didn't already know that you have cancer I would be glad if you told me and if you shared some of your experience with it. As it is - I know it's not the same at all - but I have been glad and grateful to learn about your experience through your writing here. It has been pretty wonderful having a window into your life and into the person you have become and the journey that you are traveling, and I am so often inspired to reflection and to personal growth by what you share. My life is better for this connection and for your choice to share something of yourself, so thank you for that.

Tori Tomalia said...

Kathryn, this is beautiful. I am so touched that my writing has resonated with you. Thank you so much for opening up and sharing your experiences. If I were to bump into you at the grocery store, I would certainly want a true answer about how you have been. <3

Anonymous said...

gosh darnnit, you're awesome, Tori.

Dann said...

I'm glad you asked the question, Tori. Usually the hardest question for me to answer is, "How are you?"

It seemed like a mindless question until I got lung cancer seven and a half years ago. Now the answer involves an entire decision tree.

What do you MEAN by "How are you?" Is this a social nicety, or are you asking about my health?

I can't remember... Have I told you I had cancer? In work circles I have told some people and not others... but then some of those I told have told others, so I'm not sure if you know...

Do you want to know just the big picture? (Is the cancer stable? Yes/No)

Or do you want to know what it's really like? (Did radiation kill the hip pain? Can you go to the gym again? How is the Tarceva working?)

Beyond all that, I really get the part about freezing and turning around to head the other way in the grocery store. Even if I think the other person really wants to know, that doesn't mean I'm in the mood, or that I have the time to answer. It is a choice, after all.

I hope all is well with you. I just found your blog and want to hear more from you.