LIVESTRONG Blog

Don't Ask Don't Tell

Aug 03, 2009 by Doug Ulman
29 Comments

Some people ask. Some people tell. Is there a right approach or a wrong approach?

Judd Apatow’s newest major picture made me think hard about one of the seminal decisions that people diagnosed with cancer (or any other major illness) have to make. Do they tell anyone about their illness? Or do they keep it a total secret.

To each his/her own. Why do some choose to speak up. And others remain silent. Do some simply crave the social and emotional support? Most likely.

Do others fear the stigma that still exists? Maybe so.

Are some nearly paralyzed by the news and they just do not know where to turn? Absolutely.

Whatever path one takes, navigating a cancer diagnosis is not easy. It is terribly difficult.

In ?Funny People,? Adam Sandler chooses not to initially expose his diagnosis to anyone as he fears that people will treat him differently. Reflecting on my own experience I can understand his point of view. After all, 13 years removed from my own diagnosis there are still people who ask me ?how I feel??

?How do I feel?? I feel great. I feel fine. Maybe they ask because their frame of reference for me is that I was sick once. Maybe they ask because they don?t know what else to say? Regardless, it is a constant reminder that once you share your story you may have to deal with these comments and references for the rest of your life.

Cancer is a disease in the body but it most certainly also brings a social element that is not all that well understood. This is the essence of the word ?survivorship.? This is why building a community of survivors is so important.

There is no right or wrong path to choose. I am glad I chose early on to share my experience with others but that doesn?t mean there aren?t days when I wish ?cancer? wasn?t the topic of conversation.

Judd Apatow has successfully highlighted an issue that is relevant to everyone with cancer and I applaud him for that. He also has found a way to express his own family?s experience with the disease so that others might benefit in some way by thinking about this issue ? to tell or not to tell, that is the question.

Hagvist

Great post Doug. Good reminder that supporting people through their battle is not a ‘one size fits all’ process.
Jason Villarreal

We have a friend that didn’t want to disclose her diagnosis. Seemed like she didn’t want to be a burden. All I know is that cancer is something best fought with a team of supporters. Everyone has their role. One should never be ashamed or have to go it alone.
http://twitter.com/WriteOnRideOn Janet Lyn

Thank you for voicing such an important aspect of the lives of people affected by cancer and other life-threatening situations. Whether to tell is a very personal decision, though a decision that one way or another ultimately affects everyone around that person.
When my grandfather was diagnosed with multiple myeloma 20+ years ago, he decided that he and my grandmother would be the only ones who knew until immediately before his death. I remember the complete shock because I didn’t even know anything was wrong. I respect his right to make his own decision. But I also know it left my grandmother without any support while she was going through it with him because she couldn’t tell anyone. So there’s a lot to consider in each unique and individual case.
I think that the more light we shine on a subject, the less fear and stigma will be associated with it and the more people can reach out for help and support.
It’s interesting that what you wrote can apply, as well, to survivors of other traumatic life experiences. Everyone wants to be known for more than just being a survivor. At the same time, putting yourself out there may help someone else in a similar situation. Sometimes the most powerful help is to know you are not alone!
scott burns

Good topic. Really a difficult and touchy issue. I believe that openly sharing difficult things can be therapeutic. However as you touch upon in your blog, the future discussions will be a constant reminder and I know that the constant reminders bring back the feelings of fear for some. This is where a good support system can be so crucial.My personal feelings are that it is all difficult so share your feelings and diagnosis with those close to you so they can help you through the rough times.
http://twitter.com/hahnfeld Marty

I told barely anyone while I was going through it, no reason to advertise I thought.

But after the ride? I don’t mind people knowing what I’ve been through at all – it made me a better & stronger person. It imparted perspective, and (gasp) maybe even a little wisdom.

The best reason not to hide that you’re a survivor? Making yourself available to counsel people who are facing cancer… some need guidance and it feels good to be able to help.
Susana Hernandez

Es una reflexión muy interesante, cada persona sigue el camino que puede, cualquiera sea, es dificil. Compartir experiencias debe resultar muy útil pero sobre todo sentirse apoyado.
El que está cerca del enfermo por supuesto trata de lograr su bienestar, pero el miedo y la impotencia hace que muchas veces no se pueda enfrentar bien la situación
La lucha es muy dura, física y emocionalmente, gracias a todas las asociaciones que ayudan a sobrellevar el camino
EJ

Great blog, really made me think what I would do in the same circumstance. I think I would tell, just to have a support team with me and help me fight.
Like Janet Lyn, my fil is dealing with cancer without letting the family know. My mil let it slip to my husband, but now denies saying anything. I so would like to help and support them however they have made the choice to “not burden” the family. This only makes it harder on those who care.
I do support all those with cancer by supporting LAF and American Cancer Society.
Shiela Oncology RN

I would say most people tell at least close family members & loved ones. I’ve met a few who chose to keep things to themselves primarily to maintain privacy & not be pitied.
I remember a woman who chose this option and she was so starved for support that she would hang around the clinic more than necessary, became depressed during her treatment course & needed physical rehab for deconditioning too. It took it’s toll to say the least. One thing we can do to support people with cancer is to help them anticipate questions from concerned coworkers, friends & family and collaborate to develop answers they are comfortable giving. Also, when people come by to show support – it’s ok to say “I’m glad to see you – can we talk or do something that doesn’t remind me of cancer?”
No one wants to be pitied but there are ways to get around that without isolating oneself.
Robin in Denver

I didn’t tell anyone, especially family. I was afraid of condemnation, pity or both. I DO ABSOLUTELY believe there is still stigma attached to disease, regardless of type. I experienced that when after 3 years I applied for a job. At the 3rd interview (supposedly a formality only) as the only candiate, I was asked why I had a gap in my job history. Being an honest person I said that I had cancer and waited till I could perform a job and fulfill a commitment. I was told within the hour they “found someone else”. SIGH… I can’t imagine what someone with AIDS has to endure!

So I continue to keep my past cancer, not a secret, but not discussed. Although it is hard to hide the scar across my neck.
Calvin

I am supporting a friend who has terminal pancreatic cancer. His immediate family are doing a wonderful job supporting him. I believe I may be the only friend that knows about this, as he had me promise not to tell anyone. I do feel his other friends are going to be hurt by his decision, and our mutual friends may not understand why I didn’t tell them of his prognosis. I respect his decision, but I am not comfortable with secret I must keep.
http://www.anilarora.com Anil Arora

When I first diagnosed, I thought about this. I decided to tell all of my family and friends myself instead of having them hear it secondhand. Initially, I got tons of calls and sometimes a bit of that pity, which was a hard to swallow. But instead of hiding, I decided to blog about everything. Not only did it keep everyone informed about how I felt and what procedures I had to go through, it was also cathartic.

Even after a year of remission, I wonder how to introduce my friends who didn’t know me then to the fact that I went through this. It’s not obvious because I look and act “normal”. I don’t mind people knowing, I just don’t want the sympathy. But, I guess that’s just something that has to be said. I’ll keep my blog up and even write about things afterwards. In the end, if it helps someone that I know or someone in the six degrees, then it’s worth it.
http://www.aftercancernowwhat.com Aftercancer

I guess the decision must vary based on the type of cancer you have. I can’t imagine that I would have been able to not tell people what was going on. I worked through most of my breast cancer treatment, including 12 rounds of chemo, surgery, radiation and more. I look back at pictures and I looked like hell, not to mention that my hair fell out twice. I couldn’t hide anything. Who knows, maybe it was a gift that I didn’t have to make the decision.
lisayumi

It’s hard to keep it a secret. When I was first diagnosed I didn’t tell anyone, even harder because I still lived at home. Eventually my boyfriend noticed that I was “sicker” than the average person. However, eventually my parents and a few friends found out and were devastated because they thought I didn’t trust them. My reason was that I didn’t want the pity and because I wanted to protect my parents and not be a burden. But since I saw how hard they took it, when I relapsed, I decided to be open about it. I want to help people realize there’s no shame in having cancer and to be part of the emerging community of survivors, fighters, and supports that support each other from start to finish.
Anne

I think you have touched a very difficult issue for many people.

My own experience with cancer is that I loss my mother to breastcancer when I was 14 years old. We did not talk about the disease in the family and still do not. I respect my familys decision. Even today 22 years later some people find it difficult to keep a conversation with me when they find out I lost my mother to the disesase. So, I can only imagine what cancersurviors and others fighting the disease are going through.

I have choosen to speak up and supporting the fight against cancer on a global level.
http://Twitter FancyThat3

Fantastic blog, its such a very personal individual thing. Having seen friends and my own mother suffer with cancer, i watched as they all battled in their own way, 2 are still very much alive, 1 having survived bowel cancer and the other breast cancer, they both have their own coping mechanisms,both having had the all-clear for many years, I still see the fear in both of them, will it/wont it return? Thankfully they caught my cancer early enough, after the initial tears I chose to accept it and speak out. Very sensitive issue still today!!!
http://twitter.com/DigitalSurgery Lara Peterman

I liked everything about your blog.
When I was initially diagnosed with Ovarian cancer, I told complete strangers, no family, and less then a handful of friends.

I hate when someone who knows I have cancer asks me how I feel.
I wanna say “I’m dying, thank you very much for asking.”
Fortunately, this is not true, however, I don’t want to jinx it. : P
Instead, I pretend they’re not referring to my health and respond with a non-health type answer. If they push the issue, I tell them I have cancer for the rest of my life and every day/night to think about it. Oh yea, that shuts em up.

If my cancer returns, I shall tell all my friends, family and ask them to please think positive thoughts as I fight. Most important, I keep connected to other survivors, volunteering every chance I get because it makes me feel like a normal person….a kind, compassionate, human being. Helping others allows me to forget, for a moment, about my own cancer.
Jere Carpentier

Brings back interesting moments for me. When I was first diagnosed with cancer in 1997…I TOLD NO ONE but immediate family. I told no one at work. I never missed a day of work no matter how sick I felt. I saved that for the evening. I told none of my friends. I went and bought a human hair wig and had it colored and cut to be exactly like my hair. I could do this…it was a bump in the road. My road. No one needed to be involved. When I finished with treatment…I was DONE WITH CANCER FOREVER. Did not need to talk about it, read about it,be a part of what it was.

2nd cancer, 2nd chance. I felt the reason I was given a new opportunity to succeed..was because I did not engage in a very important part of my life. This was when I started volunteering with the foundation and sharing my story and helping others with theirs. Cancer was something that people associated me with, in a hopeful way. I had so many people reaching out for support that I would have missed out if I had not shared my experience.

3rd cancer. 3rd chance. Everyone knows my story. Everyone knows I can “work it”. I call myself a chemo veteran and often show the nurses “how to do it”! I wear something yellow everyday. For me…YELLOW MEANS YOU ARE WINNING! And I am. And when anyone comments on my yellow…I am proud to tell them…I am SURVIVING my 3rd primary cancer…and working with the LAF to help others along the way. It makes it all “ok”. My story has value, my story has hope…and I am first to bring it up in a crowd. So for me, sharing my diagnosis helps me…help others.
http://www.rexcasteel.com Rex Casteel

Great post and great comments – truly humbling.

A challenge for all of us – the community at large – in how to respond.

Cancer, AIDS, job loss.

Are we supportive? Do we, as a culture, foster openness?

Am I supportive? Do I…
http://usatoday.com Sal Ruibal

Because of Lance Armstrong’s very public fight against cancer, the stigma of the disease has been transformed into each person’s heroic battle. Not everyone wins, but society now values the courage it takes to fight. Everyone fighting cancer deserves a hero’s medal, even if it is posthumous.
Christian

For some it is easier than done, for example in my case the choice to share with my family was not so simple as my father has been suffering with the disease for 7 years and counting and right now has been the hardest time for my family. Knowing this would you drop a bomb shell on your family when they are 1100 miles away and can’t do anything for you anyhow? I am not saying I didn’t inform them but it took some time waiting until it was the right time and someone wasn’t very ill, having at least a little time to recover treatments.
http://www.tourdeschutes.org Gary Bonacker

Great topic. it is something that any of us have thought of after diagnosis. I work in a public place and knew I would be gone for surgery and treatments. It made sense to spill the beans. I think that in the big picture it was good to let others know of my cancer. You may lose some people, but others will help you through this part of your story. If people can’t deal with it, then that is there loss.
http://www.tourdeschutes.org Gary Bonacker

Great topic. I think any of us who have been diagnosed with cancer have thought about this. I work in a pretty public place and with being gone for surgery and treatments it made sense to spill the beans. There are a lot of people who are willing to help in so many ways. You may lose some, but what you gain is by far a bigger part.
kevin murphy

People NEED encouragement to open themselves up to the idea of telling others. My wife’s dear Aunt told no one she was terminal, and few knew until she had died. It was her choice but I wonder if she understood the love and support she shut out. I don’t pretend to understand her feelings but I believe support and encouragement and the survivor community could have made her end of life better.
http://www,thecancerwarrior.blogspot.com Mel Majoros

I think there is less of a stigma than there was in the past. In my case I wanted to tell my employers right away, it was really hard at first, I was crying in my boss’ office and she was very supportive, I had two jobs at the time, so I had to tell one employer, then the other. Both employers were supportive and knew that I had a good sense of humor, so no one pitied me, because they knew that I would have none of it. I even told of my doctors not to give me that look, even though they though they were being sympathetic, I was not to be pitied or felt sorry for. One of my bosses even said that they admired my attitude and they would make sure that my co workers wouldn’t do anything to change it. I think it is all about the attitude of the cancer patient that determines the attitude of their people/co-workers/ friends and family.
http://www.mithaimate.com/ sweets

In comedy, timing is everythiing. With Funny People, definition is everything.
http://facebook.com Chris

To disclose or not to disclose? . . . As a cancer survivor, I have faced that question many times, and in many different contexts. The responses have been mixed: some positive and supportive, others not at all. Most responses (to the disclosure of my cancer survivorship) bear a striking resemblance to the responses that I received after returning from combat (and having been shot at by both friendly and unfriendly forces) in the Middle East.

Then, most people: (1) asked me whether I killed anyone; and/or (2) belittled my experience. Similarly, in response to my cancer disclosure, most people slough off what I experienced because they do not want to face the reality themselves. It is too scary for them. Denial is much easier.

On the other hand, those who have (or whose friend/relative has had) a prior history with cancer have been supportive. It is quite sad that they had to experience the stress and trauma of a cancer diagnosis in order to then show compassion to someone else.

I think what I have learned is quite simple: most would rather avoid scary stuff unless, through their own experience, whether directly or indirectly, they obtain the capacity to show compassion with regard go cancer, combat, or anything else scary enough to put the unexperienced (and unknowingly lucky) on the defensive.
Sandra Mitchelhill

As a cancer survivor, I am glad I shared my experience with family and friends. Without their support it would have been much more difficult. I had a masectomy followed by chemo and radiotherapy. All this made me very sick but I always tried to have a smile on my face. This showed others that there can be life after a cancer diagnosis.

Now, five years on, it is good to be able to share my experience with others who are fearful of a diagnosis.

I believe the stigma of cancer can only be removed if survivors continue to share their experiences and show, by the mere fact they are alive, that cancer can be survivable. Don’t hide your experience, share it to help others. You, as I have, will reap the rewards of being compassionate to others.
Tom Fuller

After prostate cancer surgery in 2001, I never thought of holding back regarding my experience, particularly when I could be of encouragement to friends facing the same battle. Nevertheless, there are times when you just can’t be clinically dispassionate. Witnessing Le Tour de France in person this year, I had to choke back tears outside Le Grand Bornand as I tried to scribble encouragement on the pavement in yellow chalk…”Cancer….In to Win Lance! In to Win!”. I overheard someone reading the message aloud with curiosity, but I was too overwhelmed with emotion to explain. Thanks to the LIVESTRONG team and Lance Amstrong for leadership in the battle against cancer and in reminding us that living is more than just surviving. It is indeed..living strong!
http://www.motiwords.com Patrick

I knew I needed the support of my family when I was diagnosed with lymphoma early this year. After all, nothing is thicker than blood. I also informed my boss, so that alternate arrangements could be made to back me up when I underwent treatment. I am glad I have a very supportive boss and colleagues. As to friends, I only let my closer friends know about my condition. I thought, why tell the whole world and let everyone bombard me with questions/concerns. It would have been quite a chore to manage that, especially when I was undergoing chemo.

Now that I have finished all my treatment, it is time for me to get back to work. This time though, I am all ready for whatever questions that have been hanging at my customers/partners/friends/peers tongues. And I will refer them to LIVESTRONG site for more insight and hopefully, gain more supporters for the cause for cancer.

Don't Ask Don't Tell

Aug 03, 2009 by Doug Ulman29 Comments

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Aug 03, 2009 by Doug Ulman
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