Birds In Spring: Does Having Cancer Change Others’ Opinions Of You?
I recently read an article in the Kansas City Star that looked at how cancer patients are treated by others, and how we are looked upon by our society in general.
Overall, I thought the sense of the article was quite negative, but maybe not far off the mark.
It reminded me, too, that I don’t really want others to think of me first off as a cancer patient.
A couple of years ago, for example, I was speaking with a reporter about a high-profile multiple myeloma patient and giving him some background on the disease based on my experiences. The writer asked if he could quote me. I declined, saying, “I really don’t want to have someone Google me and have your article come up identifying me as having multiple myeloma.”
My attitude about that has changed a bit since I started writing this column, and for those who matter in my life – family, close friends, and my employer – I’d say I am better off for their knowing my diagnosis because they have all been incredibly supportive.
At the same time, even now, I’m not exactly keen on the fact that it’s pretty easy to discover my diagnosis online. Not that it’s necessarily a bad thing.
For example: Earlier this month I got a call from an acquaintance who wanted to go to lunch. He’s someone I do a fair amount of business with, and we’d been trying to get together for some weeks to go over things we might be doing this fall. The meeting turned out to be something different entirely.
He said he’d recently been diagnosed with monoclonal gammopathy of undermined significance (MGUS) and while he was researching it online, he came across my Myeloma Beacon column. Before that, he had no idea there was something going on with me.
It gave him the opportunity, though, to talk with someone he knew who’s had experience with myeloma. I was more than happy to help him out. My motivation for writing here in the first place is to try to help others.
The question remains, however, does my being identified as a myeloma patient mean that people look upon me differently than they otherwise would? Are we cancer patients treated differently?
I think the answer to that is one of those “yes and no” things.
There’s no question in my mind that there are those who think people living with cancer and cancer survivors are somehow devalued. We’re seen by those folks as not being fully capable of functioning. From the very beginning of my battle with myeloma, I have sought to prove these people wrong, understanding that to do that sometimes requires extraordinary effort to overcome those very things that affect my ability to function.
I’m surprised how often my cancer comes up in conversation.
There are those who, when they see me, ask, “How are you doing?” and they sometimes say, “Gee you look good.” Now, I know that at no time do these folks want to stand there and have me tell them what’s really going on with me. So, I just say, “I’m doing great, thanks.” No matter what. I’ll probably say that to people right up until the time I’m on my deathbed.
There are others, however, who genuinely want to know what’s happening with me. At a neighborhood party this summer, I was really surprised by a group of people I was sitting with who asked me lots of questions about what I’d been through. It was the most I talked publicly about my experiences, and I sought to tell them stories where I could inject some humor into my experiences.
When I’m with people who sincerely are interested in what I’ve been through, however, I am constantly watching for eyes to start glazing over, so I know when to quit talking.
Even among some of my friends, I’ve gotten some strange questions that reveal to me that they have a complete misunderstanding of what cancer survivors think and feel. One evening a friend said to me, “How do you keep from being depressed?” And I thought, “Wow, is that the image she has of cancer patients – that we’re morose and blue all the time?”
These awkward moments don’t just happen to those of us with the disease, but our caregivers also sometimes find themselves in uncomfortable situations. The comments can be crass, even. Some time back, one of my wife's coworkers, whose husband died more than two decades ago, said something to the effect, “Well, when Lou passes, it’ll be easier on you that it was on me. I still had three children to raise.”
Since I read the Kansas City Star article, I’ve engaged in conversations, mostly by email, with other myeloma patients to see what they think.
One of the things that happens, I’ve learned from others, is that there are those of us who are reluctant to tell others of their diagnosis, lest they be branded with the “Big C.” From just chatting and emailing with other cancer patients, that attitude seems more common that I thought it would be.
Sharing a cancer diagnosis with others isn’t the problem so much as being selective about whom you tell. The other problem is that the more folks you tell, the more it gets around.
The old saw about keeping a secret is true – once you’ve told more than one other person, all bets are off.
Hanna, a frequent visitor to and commenter on The Myeloma Beacon, told me that she avoided telling others about her diagnosis in the beginning, much as I did.
The reaction of others can bother her. One comment she made was that she finds people speaking to her in a tone of voice that she dislikes immensely. It’s as if, she says, “they are talking to a sick dog.”
Her experiences haven’t changed her initial view. “I still don't tell anyone if I don't have to,” she said.
A lot of what we confront from others is, I think, largely a result of a general ignorance about what it means to be a cancer patient/survivor.
I’ve started to think that you can’t really understand what cancer does to you, and how it changes you, unless you have it.
I know, too, that there are those who intently want to learn more about cancer from us.
So, I try to be patient and understanding, and to shrug off the inappropriate comments and attitudes as best I can.
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Hi Lou,
To answer your headline I would say no, people's opinion of you, as an individual does not change.
However, people treat you differently because we are different. Just as an exceptional tall, fat, or beautiful person. Human beings treat anything/anyone that is different from the norm differently.
That is what you have been experiencing, the awkward social questions/inappropriate responses when individuals do not know how to treat something/one that is "unknown" or different from the rest of what they experience in their daily lives.
Ultimately, I agree with you..it's best to family and end there.
The world need not know you are now 'special'..or they will put you on the little short yellow school bus and everyone will know!!
Most of us spend our lives 'fitting in' so different is seldom good.
Hi Lou,
when I was diagnosed in July 2010, I immediately informed my colleagues, my managers, my family and my friends. Maybe was it too much because a lot of people, more than I expected, were aware of what happened to me. However I am not complaining because I received a lot of support during the six months I spend between my home and the hospital. Now, eight months after my stem cell transplant, I work on a full time basis after some months on a half time basis and it is fine. My strategy is now to avoid talking about the disease unless someone asks me details as you explain in your chronicle. I always say I am fine and it is true for the moment so it is not lying ! And now my colleagues, my friends and even my children seem to have forgotten and they don't always ask me how do I feel. It is like a victory to me because it means that I look fine and that the normal life is back and that everybody is convinced it is a bad memory. We just share with my wife the fact that myeloma is sleeping but ready one of these days to reappear. However it does not prevent me from having real fun. I have the chance to do what I like, travelling. This year Warsaw,Venice, Prague, Krakow, Nice and Roma in October and Barcelona in November. I hope it will last a long time ! Cheers. Stephane, France.
My experience has been, when you tell people it mostly makes them uncomfortable & they,re not interested. Even close family members. They don,t want to talk about it or ask me any questions. It,s a very lonely place to be. Judy
Suzie, I think if there had been some way to put a cap on the bottle containing my diagnosis, I would have done it. The problem is, once it gets out there even a little bit, it's only a matter of time before the knowledge starts spreading. And, Stephane, I think you are right, that if we have to say something, the minimalist answer is probably the best..but...
Judy -- I think we all want someone who will just listen to us occasionally. I've found that when I've been a willing listener to other cancer patients, they so often just want to talk about what they go through. They don't whine or complain...they just want someone who might understand a little bit about what's happened to them.
This is a really good topic, Lou. I too was really careful initially about mentioning myeloma online and to new people I met. Then, it was uncomfortable not to reveal that little piece of information that is actually a big part me (whether I like it or not). Now, I am just totally "out" about it. I think it normalizes cancer for others to know someone "living" with it, rather than on their deathbed. Thanks.
Lou,
I understand the spreading.
Point of fact, I am contemplating retracting the diagnosis, all together.
I am seriously thinking of simply saying after a second opinion we learned that it was not MM after all.
I do not want the inappropriate responses, queries, that will keep me focused on what is wrong when I want to spend my time thinking about things I love, places I want to go and just filling up my spirt with affirmations of love, peace, hope and faith. All while listening to my favorite jazz artists.
Hi Lou,
Good article. When I was diagnosed in 1995, I took my time telling anyone except my wife. After a week or so, I realized I had to tell my business partners, and I requested secrecy from them for a time so I could sort things out.
The hardest was my 10-yr-old son... it took me more than a month, not until the chemo effects were showing up, to tell him.
After that, the pressure to keep it a secret was reduced, and I started telling close friends, without the secrecy caveat.
My experience is that everyone reacts to cancer patients differently. Most of my friends have been great, but a very few seem uncomfortable around it....one just disappeared from my life. Some are very curious about it and want to know all about it, and I enjoy telling them.....if nothing else, MM is a very interesting type of cancer!
I had a stem cell transplant and a great 6-yr CR with no drugs at all, and during that time, my relationships slipped back to pretty much a pre-cancer state. Many of my friends thought I was cured, but I told them it was coming back, so now that I've relapsed it hasn't been a shock to them.
I just completed my second stem-cell transplant, and am doing well.
Thanks,
Jon
Suzierose,
I agree with you. I wish I could put it back in a bottle and only have family and 2 or 3 friends know.
People are uncomfortable around me and they look at me differently. Some avoid me in public. Of course, these are instant reminders to myself that I'm sick.
So far people in my business world do not know I have incurable blood cancer, but when they do find out it will not be to my advantage, to say the least.
My advice to newcomers to the MM arena is to be very, very careful about telling people. Even though you tell them it's confidential, they'll forget about your desire to keep it that way and soon everybody knows.
Another strategy I've mulled over is to say I have Hodgkin's disease (90% cure rate). That helps explains the long hospital stays and baldness. After recovering from the chemo, you could say "all cured, no need to talk about it anymore" But..when I think of lying about it, I get cold feet!
When my wife and I first decided to tell a few people, it was really freeing. I remember feeling so good about telling others our dark secret. But as the months and years roll by, I wish nobody knew.
Wow...sorry about that depressing essay. I guess I needed to vent--thanks Lou I needed that.
I'm two days back from my tandem transplant. I'm already stronger than I was yesterday. Feels great. I might even get in the old (clean) car and drive around a bit. Just don't tell my oncologist.
Stan
Dear Lou,
Thanks for bring up a topic that we have all experienced to some degree. Often when people hear bad news of any kind (illness, car accident, etc.) they tend to search their memories and begin to tell you their stories, and the focus is on them and their fears. I decided that I would be most comfortable being open with others about my myeloma diagnosis since the word would eventually get out anyway, and it took less emotional energy than trying to keep a lid on the news. The responses have been interesting - ranging from enthusiast, positive support from those not focused inward, to a brief, polite "hope you get better." After years as a nurse, I choose to try to not take it personally (which I admit is sometimes easier said than done). But if people drop out of my life, it it due to some problem or fears they have, and I'm not at a place right now to become their comforter. I still have the love and continue support of friends and family who look outward.
We can also give people a different kind of story to tell such as my friend who lives far from me, and recently she said, "You're laughing!" And I answered, "yes, that story you're telling is funny." I know she thought I was hanging my head and moping but learned I am really living. Of course, this is what you are always telling us to do, Lou, so keep up the good work!
Linda
Thanks, Lou, for writing about this aspect of cancer. I was diagnosed in '04. After the initial shock wore down a little I began to reach out to my closest friends and family members. With few exceptions almost all were so threatened by mortality, not knowing what to say, feeling pressure for not having a solution, etc etc etc. Over seven years later I have still not heard from most of these folks (including a family member). Though now I've learned through trial and error who to tell, how to tell, when to leave it alone. My marriage was my biggest casualty. My wife just could not digest it and I learned much from that. Though I want to say that I'm not one to cry on other's shoulders or deliver news of my cancer to others in a way that expects solution. I've always been very careful about the words I choose.
It's different for everyone, much as the disease itself is. But it is indeed a lonely place when you feel the only person you can talk about your disease with in a casual manner is your therapist.
Thanks again, Lou. There are other aspects of the disease aside from test numbers and transplants. I hope to see more open discussion regarding this topic.
Best,
Michael
Once word starts getting around, there's nothing you much you can do to contain it. At one point, I started getting phone calls from people I hadn't heard from in a long time...and I have no idea how they found out. Of course, I haven't heard from any of them since either.
Jon - it's great that you're doing so well...I had a three-year remission with no drugs or treatment. I know that there's an opinion that people should do maintenance even with a CR, but I had three years where, just like you, my life was pretty normal again -- and no side effects to have to deal with.
Stan, Linda & Michael: We're all kind of in agreement that it's challenging in deciding what to say and to whom. I do think sometimes that it might have been easier just to keep the cancer diagnosis to myself and a few others and quietly get on with my life.
Pat -- I think you're right that it's good for others to see active, engaged cancer patients. When I was diagnosed, I took inspiration from people like Mel Stottlemyre, Geraldine Ferraro and others who didn't seem to skip a beat in getting on with their lives despite having myeloma.
O my GOD!! thanks Stan!!
So glad someone else affirms my thoughts!! GMTA!!!
I am going to do precisely what you said since Hodgkins is curable, especially since Sen Arlen Specter made the disease so highly visible and curable as a US Senator.
Just GREAT!!
Gonna say, I went to get second opinion and they determined it wasn't MM after all.
So neat....I just love it when someone else has a better tactic/strategy!!
Hodgkins, explains it simply and keeps it moving...stop all the yapping tongues, and inappropriate responses not to mention the pre-planned demise!! Hodgkins, makes me a survivor on an obstacle course but I will get to the finish line....
hahaha!!
Plus, like you said I have an excuse for therapy and feeling bad....o this is so wonderful it is delicious!!
LOVE IT!!
Lou--I kept my situation to myself and wife for 2 months. I looked and looked for advice on the internet on how to handle telling others. I mostly found people advising cancer patients to share their situation with friends and family and to accept the help they offer etc. I couldn't find advice from the perspective that you have brought up. I wish I would have found your article (or followed my instincts) in that first 2 months!
(I should mention that there has been some positive to telling others, but all in all, I should have kept it private)
This came out last week and I empathize with the coach.
"Former Florida State football coach Bobby Bowden keeps quiet for years about his prostate cancer, because he knows opposing coaches would use the illness ..."
Suzierose--I'm so sorry to hear about your recent diagnosis of Hodgkins disease. I know this is a trying time for you and your family, but in a couple of years you will be done with the beast!
Your article hits on a topic I've also been giving thought about and have considered writing about on my webpage. For the most part, I am not sorry I've let people know I have MM (diagnosed this past Jan), but I do find some people treating me differently. Like you, I've found I get a lot of comments like "wow, you look great", with the unsaid ending being "why don't you look like you're dying" or something similar. And like a lot of others have said, the best response to most people when they ask how I'm doing is to just say "I'm doing OK". People are comfortable with this response. Only family members and a few friends are really interested in hearing more, but that's OK, it's a tough topic to hear about. The other reaction I've found is that some people tend to keep an extra step or so back from me. At first I was frustrated and felt like saying "I'm not contagious", but my wife made the observation that they're probably uncomfortable, not sure how what to say, so they back off to where I'm not within their comfort zone. Finally, one of the best things I've found to keep people from treating me differently is to let them know I'm still active, doing most of the things I use to do. For example, I still bike 80-100 miles a week, lift weights, etc. At first they are somewhat amazed I still do this, but soon they realize that I'm still pretty much the same person I use to be.
LOL LOL, your sympathies are deeply appreciated.
Thank you for caring Stan.
hahahaha
K. Jones.
I've found I change my opinion on this topic as I tack on more time battling this beast.
Now that I've gone through 2 years of off and on again chemotherapy, including 2 SCT's and 2 VDPACE sessions, I want everything to return to as normal of a state as possible. That includes having normal conversations with neighbors at the meat counter without the "sooo are you really ok or..." Also I have 3 children in school (very small town) and I don't want their peers feeling sorry, or heaven forbid, making mean comments to them regarding my health.
I've been out of the hospital for 6 days from the second SCT and I'm sooo wiped out! I guess I should have expected it.
I went to my sons football game on Friday night--had the most fun I've had in months. I came home, threw up and slept for 13 hours. Of course my wife was right in telling me to not overdo it.
Furthermore--sorry about long winded essay-- Nobody outside of my family knows I have multiple myeloma. The friends and friends of friends only know I have blood cancer. So nobody can quickly google my disease and spout out statistics to others.
Lou - Friends grapple with the issue of saying too little, too much, or something inappropriate to friends with cancer. When I found out you had MM my heart went out to you but I know you're a private person. I think friends do the best they can trying to find out whether the person does or does not want to talk about the disease, with some exceptions, such as people you never see or hear from again.
I am genuinely interested in how you are but try to take cues from you. My sister, who has lung cancer, feels better talking about it and her chemo and continuing tests. Everyone is different of course.
Our recent Rotary president had breast cancer and underwent chemo the whole year in office without missing a meeting. She found it better not to talk about it at all because she didn't want it to affect people's perceptions of her as capable of being president - understandable. I can see where the work place could be dicier than family and friends.
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