Tuesday, September 23, 2008

Lupus Pufus

A quick nod at my friend Maria over at My Life Works Today! She and I have been talking a lot lately about how great minds think alike and I am inclined to agree, yet again, based on her post today on lupus walks and illness advocacy.

Now, I’ll be the first one to tell you that this whole chronic illness community is about shared experience and not competition, but I can tell you that I was incredibly put-off to see that Oprah had devoted nearly all of her October issue to breast cancer.

While I am certainly sympathetic to the cause, as I think we all are, breast cancer advocacy is everywhere, even on cereal boxes. But where’s the advocacy for all of the other horrible diseases that plague women in this country?

You know, Oprah used to be the “poster girl” for going against the grain, but lately, all I see her doing is contributing to mainstream, middle of the road conceptions of life. And I’m sorry to say that I’ve had enough!

Now, I opted not to take part this year in walks for lupus or rheumatoid arthritis. The reason being that this is all still too new for me. So before you go calling me a hypocrite, think of this:

Imagine the scene in “Miss Congeniality” where Sandra Bullock is “gliding” across the street and a cab almost hits her. She yells at the cabbie, “I’m gliding here!” Well imagine that scene with me in it and I’m yelling at the cabbie, “I’m coping here!”

We all have different ways of dealing with our illnesses. For me, acknowledging my illnesses in such a “public” way is honestly something I’m just not ready to do yet. But that doesn’t mean that I’m not thinking of ways to get involved or educate those around me. And clearly since I blog about it almost everyday, I’m not going to be “silent” forever.

I think that it is important that all of us do what we can to be a part of the effort. While breast cancer survival rates are increasing, there hasn’t been a new medication introduced to treat lupus in over 40 years! What does that tell you?

And in her post, Maria makes an excellent, excellent point about the fact that it is pretty absurd to expect people who can barely make it through most days to be the ones solely responsible for the advocacy that happens. Obviously, if we don’t stand up for ourselves, no one will. But from the way I see it, there are very few healthy people really fighting for the cause.

So let’s be the change we want to see!


  1. Thank you, Leslie, for putting out there your honest thoughts about where you are in advocacy.

    I didn't take part in advocacy for years simply because I struggled with figuring out what being sick meant for me - leaving little energy to think about what it all meant for others. I am better off right now physically than others are, so that window of opp is here and I owe it to those out there struggling whatever effort I can manage. That doesn't mean I'm finally comfortable with looking the part, though. That's going to stay with me, I'm afraid.

    The breast cancer machine works because they were smart: embed the illness into Mr. And Mrs. Smith's daily lives without them realizing it. Who doesn't shop? They talk to everyone and not just to each other - there's value in sharing, but it does beg the question: is anyone else going to listen?

    I hope your readers see that not participating in the lupus parade is okay - I get that. There are many ways, though, to still get our presence out there. Your post is a great start - by calling things like they are. Keep on gliding, girl!

  2. Leslie, I have much the same beef - where is all the advocacy for Migraine Disease? There are 36 million sufferers in the US alone. We don't even have walks yet (though we're working on it).

    Like you, I have a lot of difficulty being public with my disease. (One of my fellow Migraine bloggers referred to it as coming out of the chronic illness closet.) It's hard to advocate for yourself and other chronic illness patients when you don't want to tell others that you're sick.

    I'm just speculating here, but it seems to me like there are two major differences between diseases like Cancer and those like Lupus, RA, Migraine, etc. 1. Cancer is a terminal disease. While people with chronic illnesses do die from complications of their conditions, it's not the same direct cause of death as you have with Cancer. 2. Cancer is a more visible illness. That's because of things like side effects from the treatments (hair loss etc) and because it's terminal. When millions of people are dying from a disease, it gets more attention, more money, more advocacy.

    Plus, when someone dies from a disease like Cancer, the people they leave behind are more likely to advocate for more research into that disease than the loved ones still living with those with chronic illness. One of the principals of my firm lost his first wife to Breast Cancer, and his second wife is a survivor of same. He's very active in Susan G Komen, and it's one of the officially sanctioned charities at my firm (the others being MS Society and United Way).

    Don't get me wrong, I don't begrudge all the funding and research that's gone toward treating Cancer. I only wish and hope for all of us that similar amounts of funding could be put toward all of the currently incurable diseases. And I'm not trying to make light of the daily fight we go through trying to live with our non-terminal diseases, either.

    You do a lot already for the chronic illness community just by blogging. The more of us that are public with our diseases (even just on the internet), the more attention we'll get. So don't discount that.

    Hope you're doing well.

  3. Thanks Maria! Your post was such an inspiration!

  4. Hi MJ,
    It's nice to hear from you. Your points on cancer and why it receives the attention that it does is definitely well taken. I do agree that blogging is a great advocacy tool, although I'm not sure how many people beyond the chronic illness community see it that way. I think often times, people view all blogs as being that person's chance to stand on their soap box and preach or whatever. But I think trying to spread awareness is much different, much needed, and incredibly important, as you suggest in your comment.