I recently read an article in the Kansas City Star ^[1] 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.