Last night was Shannon’s office party. (Fantastic blue cheese, good shrimp.) One of his co-workers gave me a seriously long hug, clutched my arm, and looked deeply into my eyes. “How are you?,” she asked. “I’m great I replied.” “No. REALLY. How are you feeeeeling?,” she asked.
Some people who know that I’m a young adult living with incurable cancer expect me to feel like crap or be in misery. And when I’m not I get the ‘you’re a heroic trooper’ comments, the puppy-dog-eyes look, or the ‘it’s okay, I get it, you can be honest with me’ statement of disbelief over my feelings of wellness. It’s maddening.
If me feeling great isn’t good enough,I wish they ask: ‘Do you feel the physical impact of cancer on a daily basis?’ I love blunt and upfront communication, and think this is what they are trying to get at. I would reply: ‘I can’t feel the tumors and I’m not on treatment. I’ve gotten used to the side effects from my meds. The hardest part is often the mental trip of cancer, but I’m really doing great right now.’
That kind of sounds like a kick ass reply, huh? Maybe it should just be my response when someone asks me the overly tender ‘How are you doing’ question. Though I wish I could get away with “I’m great, how are you?” just like everybody else.
As much as these pitying interactions really piss me off, I see a flip side. Today the New York Times has a section on the voices of lupus. After listening to people talk about this rather mysterious and unknown disease, I see I’m lucky to have a disease with good name recognition that others take seriously. Prior to my cancer diagnosis, my doctors suspected lupus. If I were a lupus patient, I might look great, feel like crap, and nobody would even bother to recognize my disease or pain.
Do people ever ask you how you are feeeeeling in a way that is different from how they talk to someone who is not ill? How do you respond? Do you appreciate the recognition and attention, or do you wish they would approach you as they approach others?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
July 9th, 2009 at 1:30 PM
I have a hard time answering that question. I often feel crappy and wonder if the person asking really wants to know how I feel or would like the “I’m fine” response. These days I answer “I’m hanging in” and if they ask additional questions I may explain some of my physical symptoms. It is definatly an awkward question to answer.
July 9th, 2009 at 2:20 PM
I hate this question too because I really DO feel great. I have been cancer free for 5 years now, and I would like to be able to talk about other things once in a while when I interact with people. I get the “but how ARE you” more from older people - friends of my parents and so on. I understand that they may wish to talk about every ailment, but I’m really, honestly, good.
July 9th, 2009 at 2:43 PM
I guess for me it depends on who is asking the question. If it’s someone I rarely talk to, I may just say “I’m fine, doing great”, if it’s someone I may know a little more intimately, then I might tell them a little more or the truth (good or bad). I do find that after asking that question and with my positive response back, people seem to think I’m some super cancer survivor hero, and that makes me feel uncomfortable, like I have to live up to something that is more than I feel I really am. The only thing I don’t mind, is sharing my story or my thoughts with someone that may be going through the same cancer struggles, or the caretaker/friend or family member of someone who is.
July 9th, 2009 at 2:55 PM
I sometimes just answer “Well, I’m still here. So thats a start.” But depends on the day I guess.
I’ve written about this before on my blog, but most recently here:
http://thecolonchronicles.blogspot.com/2009/05/i-am-just-visitor-in-your-world.html
July 9th, 2009 at 4:10 PM
us cancer widows get this too!
people seem to want to think youre just “being brave” for them. im not sure how many people really want the long answer though, either.
July 9th, 2009 at 5:24 PM
I have good days and bad days. I feel like saying “I hate cancer - I hate feeling like crap today, I wish I could go back to bed, want to watch my 2 year old for the day? Thanks bye.” But instead I say “Fine, thanks.” For me the “Let me know if I can do anything” from basically total strangers is even worse. What can you do? You aren’t a doctor, you aren’t God, and I don’t know you enough to trust you with my child or to ask you to come clean my toilets, so …. why ask?
July 9th, 2009 at 6:01 PM
Seems that whether we feel like crap, or feel great, none of us likes this question. I don’t think it takes a huge amount of trust for someone to clean my toilet, so Greyash, if I were you I think you should suggest it next time someone offers to help you and see what they say! Becca, I read your blog post and I think it really gets to the guts of the matter. Plus, I adore your pics!
July 9th, 2009 at 6:16 PM
Having suffered with Crohn’s Disease for most of my life, getting Cancer seems a little easier. For me, people understand Cancer, they seem to treat it differently then other disease, however, in my life, Cancer is more of an side-step then life altering - at 19, Crohn’s was life altering.
The “How are you” question does irritate me, I usually say something comical, but alot of the times I simply blow it off. I’ve learned people normally ask because they are thinking of how they might be or feel in your situation, and they simply want validation; I don’t think they mean any ill will, but rather, just feel detached…what’s worse is definitely the “you don’t look sick”.
Cancer - people give respect too, they give you room; Crohn’s - people don’t understand, it makes them uncomfortable.
Just my perspective
July 9th, 2009 at 7:46 PM
I call it “cancer face.” The “oh, aren’t you brave” or “how are you feeeling?” questions are a manifestation of our cultural paradigm around cancer. According to the cultural paradigm, cancer is a death sentance for most, if not all, people.
While I do think that most people give you cancer face because they mean well, I don’t think we’ve even begun to have serious ways of discussing illness, disaster, tragedy or loss-especially in American culture where it’s assumed that we “get what we’ve earned.”
My usual response is to give the questioner the honest truth. Sometimes that leads to questions. Other times, it leads to great discussions.
I recognize the feeling of discomfort that comes with people making you into a “hero” or a “brave cancer patient.” And at the same time, I feel like the only cure for these stereotypes is to live out loud…to be honest and human about my disease and my treatments.
As to cancer being easier? I dunno. I know Crohn’s sucks because my cousin’s hubby has been battling it for many, many years. And I know cancer sucks for many reasons, too. In some ways, it seems from my perspective that it would be a relief to have a condition where people don’t assume as much about the outcome. However, I suspect from an empirical standpoint that both diseases are equally difficult to deal with…just in different ways.
July 9th, 2009 at 11:24 PM
I’ve been negotiating “How are You?” for 18 yrs. I’ve been encouraging people to ask, “How are things?” thus leaving it up to me to answer whatever way works for me. But many people who just keep asking, “How are You?”
The solution for me has been to keep in mind they love me and don’t want to hurt/bother/annoy me, and I can answer whatever way works for me!
Your readers might enjoy this essay, entitled, “Surviving ‘How are You?’” at
http://www.leukemia-lymphoma.org/all_page?item_id=102655
With hope, Wendy
July 9th, 2009 at 11:39 PM
Laura- you get to the heart of why I wanted to write my book Everything Changes. For me it was not only about investigating the young adult cancer scene, but to do so in a way that reveals voices we hardly hear and to open up new conversations about how we look at illness, disaster, and all that good stuff!
Wendy- You are totally on to something with the “How are things?” Sometimes when people ask how I’m doing I’ll just answer with whatever was going on in my day i.e. “Great. I went produce shopping because I’m baking cobbler. I love summer fruit. Do you ever bake?” Good way of redirecting when I’m more in the mood to talk about something other than my disease.
July 10th, 2009 at 11:13 AM
Dear Kairol:
I got to your website from NY Times’ Lupus Article. I am a systemic lupus patient.
I was touched by your comment “I am lucky to have a disease that has good name recognition” - well, I don’t know which one of us - cancer patinet, or lupus (or other weird autoimmune illnesses)patients - is luckier (:-)) - but I think our frustrations are very similar. In fact, I was really struck by how much I could learn from your website.
For you, it’s the “you must be lying if you have cancer but insist you feel well”. For us, “you must be lying that you have a serious illness because you look great”.
The question of “how are you feeling” is a tricky one for both of us.
When I was diagnosed, I decided to tell only a small group of people for various reasons. In a way, i took advantage of the half-way normal appearance (despite feeling like someone was poking me with icepicks all over my body).
So, luckily, for me, most “how are yous” are fairly straightforward. I just tell them I am fine, or have a cold, etc.,
With the people who know about my lupus (and I thought I chose carefully!), I still had to make a distinction between those I do tell what’s going on (and they do want to know genuinely how I am), and those that I haven’t learned how to deal with well.
With the latter (those I don’t know what to do with), I never get anywhere. “Fine thanks” leads to their comments such as “see? you are getting better!”. (“you were lying about your lupus being serious and incurable - you are cured now, so let’s get back to our normal lives”). If I say “I don’t feel too well” - it leads to lectures on the importance of keeping positive (because I look great, I am making up symptoms in my head), eating well, taking supplements and exercise. Worse, they make comments like “ah, if you just push yourself to go out and have fun, you will feel better” (my doctor will punch them I am sure).
So, my answer (I know it doesn’t help, sorry), is that most of the time I just say “fine thanks” to those who don’t know or understand (and ignore whatever comes), and truly cherish being able to share and receive support from those you can share how you truly feel (I still do in moderation, though). For me, it somehow balances out.
July 10th, 2009 at 11:22 AM
Welcome lupus patient from the NYTimes. I’m glad that my book site is helpful. Over the past month I have gotten a heap of emails from people with autoimmune diseases who have read my book Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Substitute the word “cancer” in the title for “illness” and so many of our issues are similar. I nodded my head with every sentence of your wonderfully written comment. Hope to see you around here again.
July 14th, 2009 at 11:40 AM
I detest this question. And yet, what are you supposed to ask? As a cancer survivor and advocate, I have dealt with being asked this question, and I am now dealing with how to ask this question to my friends fighting cancer. In particular, I have a 29 y.o. friend that is battling stage 4 colon cancer with mets to the liver and lungs. Asking her “How are you doing?” seems a little silly - she’s not doing well, and I know it. But, what is the appropriate question? “So, how bad does life suck today?”
I hated being asked this question while I was in the midst of chemo, because you don’t want to say “Cancer sucks, chemo blows, I’m sick to my stomach, losing my hair, can’t sleep, am completely exhausted, and I’m in constant pain - thanks for asking….” And yet, saying “I’m fine” seems crazy. So, I started answering “Except for the cancer, I feel great.”
I know that people are trying to be nice, and some really want to hear what you are feeling. To those people, I was and am honest. To the others, especially those that qualify the question with “No, how are you REALLY feeling?” - I tell them that with the exception of the cancer, I’m healthy and happy and living life. I hope that it’s a sufficient answer. They seem to be satisfied.
Sometimes, societal niceties aren’t appropriate - while Ann Landers or Miss Manners might set the expectation of asking “How are you?”, they probably didn’t have to listen to the tirade of someone who’s asked this question a hundred times in a week. Maybe we should ask them? :-)
July 14th, 2009 at 3:14 PM
Michelle raises a great point, because yes, I spend much of my day talking to young adult cancer patients and I surely ask them how they are doing. For me it has a lot to do with when and how I ask them. Are we in a public place, is it a phone call where they are specifically speaking support? Because I am so used to talking to people who run the gamut from just diagnosed, to in remission, to signing up for hospice, it is easy for me to ask this question casually without the puppy dog tone of voice. I also sometimes just ask “What’s up? What’s new with you?” so people can answer about cancer or about some other facet of their lives.
July 15th, 2009 at 8:11 AM
Great post, and wonderful conversation in these comments. Sometimes I tell people I’m doing great even when I’m not because it’s not worth getting into the details; I don’t have the energy for it, and I suspect most people (excluding close friends/family) don’t truly want details. Or sometimes, I may “look” great and really feel awful.
Living with rare diseases can be dicey because no one is familiar with PCD (primary ciliary dyskinesia) so there’s the name recognition issue. However, the thing with serious respiratory illnesses is that it is often pretty hard to hide a “bad” day-the coughing, the wheezing, the gasping for air. People who don’t know I’m sick or don’t really understand what I have are often surprised if I do give them details-”But you look so good!” Yes, I do. Because trust me, if it was a bad day, I wouldn’t be able to meet up with you.
Anyway, I think it’s an easier question to ask among patients-when people know you get it, they are more comfortable being honest and opening up, and also realize they don’t have to go into detail if they don’t want to and that’s fine, too.