The Non Super-Powered Cancer Patient

"I think that the people surrounding a person living with cancer often need that person to be a superhero. They don't want to see you frightened, or sad, or depressed.

I try to deal with these expectations as best I can, even if it means that I no longer see some people, the most extreme way of dealing with them."

@ Jeanne Sather 2006 in: The Assertive Cancer Patient

About a year ago I was befriended on twitter by a group of close friends which seemed to take me under their wing. The word seems is the operative one here because this friendship only worked for them if things went in accordance with their belief systems.

One thing that was frowned on was admitting physical disability in anything other than a "fun way". As one of them said: "You'll never get a contract if you let anyone know you're sick. You have to pretend to be healthy and wealthy. Never worried about anything"

But Frankly

Even before my cancer diagnosis in December 2007, healthy was a stretch for me to pull off so that didn't fly. After some episodes of be being frank about this they departed from my support system  en-mass about six weeks after I got cancer. And I mean that literally. Within a week all were unsubscribed from my twitter, blog, you name it. One, a very prominent tweeter even dropped and blocked me on facebook without a word.

They clearly believe what they say and live their lives with FUN being the motto. And they are accurate reflections of much of the "real world" where being our real self is seems tantamount to admitting we are  worthless pieces of humanity holding a gun at the ready just to rid the world of ourselves - when in reality we're communicating a real story - without flowers and hearts and pink tennis skirts.

Because let's face it, some of us are not able to go canoing or golfing, bar-hopping or walking for that matter. It's not doom and gloom it's just reality!

This is put on a happy face thing not an unusual phenomenon. In families mothers who are getting more and more ill continue to do their multi-faceted jobs long after the children should be helping by putting dishes in the dishwasher, mixing lemonade, folding clothes and walking dogs.

The people around us can put their heads in the sand as long as we pretend we're "able".

But are we doing them any favors?

Are we doing neighbors any favors if we don't tell them we'd be glad to have them bring in dinner once a week as respite for our families? Are we doing our online friends any favors when we put on a mantle of "tough it out?"

Jeanne Sather is right though and people don't want to see us frightened, or sad, or depressed.

For the record I'm not depressed or sad so much at this point as I am frustrated and sometimes overwhelmed. Then there is pain and fatigue. That's still not under control. Some days pain is worse. But most days fatigue has me decked. Literally.

Some don't like to see that. Others dislike reality in general. But unfortunately that's what I've got.

Representing the situation as anything else seems like a lie to me.

Not to mention that it would also discount all the great stuff my twitter and blogging friends do for me, and my 22 year old daughter who has put her life on hold, is living at home and on whose shoulders falls most of the everyday "stuff." She even represents me at live events I can't get to.

I've learned to stop pretending there's nothing wrong

No longer interacting with some people as Jeanne suggests is an option. I guess education is another. But that's harder to do with some than many others. I'm lucky to mainly have friends and readers to whom I can tell the truth.

Like you.

Comments

[francine hardaway]

I love you Susan.

[Drew McLellan]

Susan,

I think we want you to not worry about being fun and just be honest with us. As you have been in this post.

We know it sucks. So when someone with cancer is all upbeat and sunshiney all the time, we know we're being held at arm's length. We don't want to be at arm's length. We want to be right there, in a deep embrace. Honestly as much for us as for you.

So bring it on. Tell us the truth, to the extent you want to share. We can take it. And we're not going anywhere.

Drew

[Simon Young]

Hi Susan,

I like this post. It helps me break out of my own issues around sickness and how to "be" around sick people...

I've been sick (with Chronic Fatigue Syndrome) but never hospitalised. My dad died of pneumonia + cancer when I was small, and my mum has a hospital record the length of War & Peace.

With that background, I should be comfortable with people going through great illness, but I, er, am not. Instead, I sometimes feel so overwhelmed by the pain of others that I just don't know what to say.

Believe it or not, your "no BS", transparent policy has really helped me come to terms with this about myself - and kind of get over myself.

So thanks, Susan. I know you didn't ask for this role, but it's one of the many things you're doing as you go through this.

[Teressa Flye]

I wish I'd read this post before I sent you that email this morning. I will say this though; even on a bad day, you still bring sunshine to people who have sense enough to see it. I'm not talking about "putting on a happy face"; you're a joy even when you don't think you are, when it's all too much, and you have to tell it like it is. The ones who really love you can see through the pain, the confusion, the frustration.

So by all means, keep on being real. The ones who matter will always be there.

[Tim '@Twalk' Walker]

The sad thing about the folks who abandoned you is that they (probably) think they're doing themselves some sort of favor by remaining "upbeat" - or whatever they choose to call it.

True statement: It's good to maintain a positive outlook generally. ("Good" = it promotes better mental health, better physical health, etc.)

Another true statement: People who are sick often FEEL SICK, and don't need the rest of us telling them to keep their chins up.

The bigger true statement: It's far, far, FAR better to go through life dealing with things as they ARE rather than dealing with them as we wish they were. You don't have to be Buddhist to believe that or acknowledge the wisdom in it.

Keep on truckin', lady. You're a hero to many of us.

[debutaunt]

“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.” ~ Dr. Seuss.

I lost quite a few friends when I got diagnosed. But it made me appreciate the others so much more. Some people just can't handle reality. It all has to be rainbows and unicorns and Hello Kitty. I've had men say they don't want to date me because I had cancer. And I tell them they could drop dead tomorrow after a McDonalds-induced coronary.

I am generally positive about things, but my blog was so important to me and it allowed me to really talk about some of the serious stuff. I also IM'd with friends who were dealing with the same thing and we'd talk about the things we didn't want to share with our friends and families. It's weird that we are the ones who are ill, yet we do so much to spare our loved ones pain.

I'm new to *your* world, but understand exactly where you are coming from. You're a great writer and I can tell that there are many many many people in your corner.

[Gloria Bell (@princess_belle)]

Susan,

After reading about the people who chose to be foolish enough to "remove" themselves from your lives, I am so angry I could spit and angry enough to shed tears at how they could treat such a wonderful, warm, caring, intelligent woman with such disregard and disrespect.

Please, please always remember that there are those of us who care and will always be here for you. We Love You and all of the wonder you bring to our lives. >

Glo