This morning Stefano and I got up early-ish and went to the Parco della Piana to see if we could find any birds, namely that little grebe family we’d photographed a couple of weeks ago (we did, and we photographed it again…the chicks are almost as big as their parents now…). 
Anyway, as I was waiting for Stefano to get his photographic gear together, I began thinking about someone I met recently. We became friends on Facebook, too, and that is how this person found out that I have myeloma. Our friendship was over before it even started.
And that got me to thinking about the issue of telling people. About myeloma, I mean.
It’s true that most of my students don’t know what I have. My boss knows, as do a couple of other people at work. But most don’t. “Would you tell them?,” I hear you asking. Of course I would. IF they asked me. Otherwise, why do it?
After all, cancer isn’t contagious.
My do-not-tell-unless-asked policy is probably rooted in an instinct of self-preservation. I don’t want people walking up to me all the time and asking me HOW I am. That would really make me squirm. I remember a distant relative asking me something along these lines: “How ARE you? I mean, you look really great, considering WHAT you have.” Uhm. Okay.
But what happens when you meet someone new? What if you like this person so much that you think “hmmm, it might be nice to become friends…”? Do you tell her (or him) about the SMM or whatever other health condition you might have?
It’s an interesting dilemma. Especially for a blogger. I mean, the blog is such a big part of my life, even when I don’t blog because I’m busy or having fun, that it would be difficult NOT to talk about it with a new friend.
And, of course, if the new friend asks to become “friends” on Facebook, the first thing she or he will see is my link to the blog. Eh.
Well, this is what I concluded this morning:
I have some really great friends. Old and new.
I’ve known my best friend since we were adolescents here in Florence, Italy. And I’ve also made some (great!) new friends through the blog. All of them know that I have SMM, or smoldering myeloma. And it doesn’t make any difference. As far as my old friends are concerned, I’m the person they’ve always known—the playful, fun-to-be-with (at least, I think so! 😉 ) Margaret who can always be counted on in a time of need. I’d do anything for my friends, and they’d do anything for me. That’s the way it should be. Friendship, I mean.
It hasn’t been always easy, mind you. Stefano and I lost a couple of friends because of myeloma. They were probably too freaked out about it and didn’t how to behave around me or what to say. I’m happy to report, though, that those were the only ones…
But, getting back to my question of the day, what if I meet someone now, and that person is afraid to get to know me because of the cancer? Well, to be really honest, I don’t need people like that in my life. After all, statistically, I’m more likely to die of something unrelated to My Eloma. So avoiding me because I have cancer cells in my body is nothing short of silly…
Besides, myeloma is not my main topic of conversation. If you bring it up, fine, no problem. I’ll talk about it…in a no-nonsense, straightforward way.
But if you don’t, I’d rather chat about other things: the weather, food and recipes, cats, the Olympics, bird watching, going on trips, the U.S. presidential election, movies, books…
Normal stuff.
Yes…I tell people…as my mission and purpose is to create awareness of this cancer and to help people who are living with it.
I don’t start off by saying that I have myeloma…but it is a big part of my life and so if there is an opportunity to educate someone about this disease…I am there!!!
Good question. So far I’m not sure who is avoiding my husband because of his myeloma. It seems like our longest and closest friends still are just that. The other people came and went anyway. The affects of his disease are more visible since ASCT and losing hair, and since two back surgeries. Drivers stop their cars two blocks away when they see him ready to cross at an intersection, which is almost embarrassing to him.
I have more trouble with when to tell people who were a part of my life long ago and I have just occassional encounters with. Like people we send Christmas cards to, or high school classmates who reconnect on FB. Myeloma is a part of our lives, and dictates many of our choices and activities. It usually seems natural to introduce it, but I don’t want to feel like I’m out there looking for hugs in every encounter we have.
On the other hand, in the on-line realm, I have people who avoid me because I’m highly political – and some who are also highly political but avoid me because I am liberal and they are not. So when people from the myeloma sites and list serve become my friends, eventually they have to deal with that. Some of us go our own way at that point, others become better friends, and to some it simply makes no difference, it isn’t an issue. But sometimes I’d just like to tell people at the outset, so they can decide whether I’m worth their time.
A great analysis of an important question! As a smolderer (one year since diagnosis) with no symptomatic action, I don’t even think of myself as ‘having cancer’, so unless a new acquaintance knows by some other means, it doesn’t come up. But if it did, I would have no problem going through the whole story. Like you, I want to be friends with people who can see ME, not a disease!
Margaret, I posted about this exact same thing a few weeks ago! I realized that there are people I’ve known for a few years who have no idea I have myeloma. It’s such a tricky thing. I completely agree with you when you say you have no problem when you’re asked about it, but you usually don’t bring it up. I’m the same way!
That is a great question It is not simple. People are scared by cancer. When first diagnosed I had a couple of my friends, whom I had for years, freak out. Did not speak to me in 3 years then I ran into one and from then on she occasionally will chat with me. The second one thought I had made it up.
I am physically disabled with full MM but unless people ask what is wrong, if I don’t know them I say nothing, if they ask I give a brief offhanded summary.
I do not dwell on my position but often out of the blue it is mentioned that a friend or family member has cancer. I ask about them and also about if they thought of natural help also. If they wish to know more they ususlly ask.
Some people are freaked out but unfortunately you have to smile and move on.
At my age I do not bother about it much as life is too short. Help where you can and asses each situation and go from there. Everyone is different and there reactions will go accordingly.