Monday, January 18, 2010

"Hello, Lupie!"

At a recent support group meeting I went to, the leader asked us at the end of the meeting if any of us were offended that she refers to us as “Lupies” in her e-mails.

Personally, I’ve never been particularly fond of the term. But it doesn’t bother me, per se, that she uses this greeting. But apparently, it bothered someone. Because she received an anonymous complaint that someone found her use of the term to be offensive.

I cringe at how political everything is these days. Take, for instance, the recent Facebook meme that asked women to proclaim their bra color in their status update to raise awareness for breast cancer.

I admit, I did it, too. But then I read this article, and I saw the error of my ways. I hadn’t given much thought to the fact that many women who have had breast cancer can no longer wear bras. So in some ways, it made all of us tit-ified women seem like we were elevating ourselves above women who can’t wear bras or no longer have breasts.

There certainly is a pride that comes with supporting our own causes. But I think we do this, sometimes in detriment to ourselves, because we have limited the scope and range of our support. It is neatly and conveniently tied up in our specific illnesses. But as I have said many times before, regardless of the particular illness, chronically ill people, generally, have a lot in common with each other.

Lupus has been getting more attention lately, but the battle doesn’t start and end with lupus. Like many illnesses that impact mainly women, lupus remains the “bastard child.” And there are many other illnesses out there that get far less attention than they deserve.

When I was first diagnosed with rheumatoid arthritis and possibly mixed connective tissue disease, I remember being very dissatisfied with this. Neither explained the whole story, and I didn’t want to get lumped into a vague disease category. When I received the diagnosis of lupus, in addition to rheumatoid arthritis, it made sense. And it gave me a box to put myself in.

But I realize now that the box may not be all it’s cracked up to be. Because so many of us have many other illnesses on top of our primary ones. I now have Raynauds, and the jury is still out on a few other auto-immune issues. So in some ways, the “check a box” mentality is severely limiting.

Lately, I’ve been at odds with various people about the role that illness should play in my life.

When it comes right down to it, I think you have to own it. Sometimes owning it means making it more visible for yourself. And sometimes it means making it more visible to others.

If I don’t do it for myself, then I do it for all those 20-something women, who, in the prime of their lives, find themselves having strange and bizarre symptoms that no doctor can seem to figure out. And for those who start having joint and muscle pain after working out, which eventually never goes away. Because I’ve heard this story all too often from those I have met who have lupus.

I guess my point is, when it comes to support, healthy and sick people play very different roles. I have established that there are certain people in my life who are never going to make an effort to understand my illnesses. And really, the only people that get to hear everything, are my fellow “Lupies,” who can understand every part of this journey.

Believe me, I love the healthy people in my life, but sometimes they really just don’t get it. And there is a huge part of me that is grateful that they don’t, because if they did, it would probably be because they’re sick, too.

When I was in the hospital in October, my room phone never stopped ringing. I think it drove the doctors kind of nuts because every time they’d come in to talk to me, I’d be on the phone. And there was a big part of me that wanted to tell them that, that wasn’t my real life. And I knew that as soon as I was out of the hospital, things would be back to “normal.” The hospitalization made a lot of people take notice, who hadn’t before.

But it’s like when you spend months and months, or even years, planning a big party. And then the party comes, and it is over with in two seconds. There’s a huge letdown afterwards. Getting out of the hospital certainly wasn’t a letdown, but some people going back to the way they had acted pre-hospitalization, was.

This is all to say that we all make mistakes sometimes. Even those of us with illness don’t always say or do the right thing. Sometimes following the crowd supercedes common sense.

There is so much competition, even between groups that deal with the same disease. So who’s being helped in all of this? And who’s being hurt by the lack of cohesion? If it was the organizations that were being hurt, then they certainly wouldn’t be so fervently against each other. When it comes right down to it, it’s the patients that suffer the most, not from disease necessarily, but from a lack of readily available support.

I’ve wondered quite often why none of the doctors I’ve been to have had any resources or literature available. Sure, now my doctor asks me to sign up for research studies, but that’s because his colleagues are doing it, and who knows what he stands to gain.

I think a lot of doctors see this as being a single patient fight. Doctors don’t really care at the end of the day if you want to stand up and speak out about your illness experience, or if you want to find a group to support you. Doctors might support events, such as walks, but again, this is to promote themselves and the newest drugs. They speak about a cure, but to me that’s not much more than a good rhetorical device. If you use the C word, you can command a crowd for sure.

I have often wondered what it would be like if lupus and purple became the “thing” that was plastered on cereal boxes, yogurt containers, and a myriad of other products. What would it look like if lupus was widely available for public consumption? I honestly think it would leave a bad taste in peoples’ mouths. I don’t think they would be comfortable with it, and I don’t think I would be comfortable with it, either. This isn’t about endorsements, even though that’s where the money is.

Clearly, I’m skeptical of the efficacy of these kinds of politics. If a certain group can’t agree on what terms they should be using, there are going to be great rifts between people with the same illness. Like I said, I’m not 100% fond of the term Lupie, but I think if someone with lupus really takes offense to it, it’s because they haven’t owned up to their illness.

In many ways, the beast is not these illnesses. The beast is the ignorance of healthy people. The beast is doctors who don’t listen to what we’re saying. And unfortunately, the beast can sometimes be ourselves, losing what’s really important, in the battle for recognition.

I think all of the politicking proves that we have to stick together. I shouldn’t have to divide my loyalty between lupus and rheumatoid arthritis. My body certainly doesn’t, so why should my mind?


  1. wow, really, just wow. thank you for sharing this. thank you for articulating it.

    i don't like to call myself "a celiac" just like the woman i work for isn't "wheelchair bound." i am a person who has celiac disease. she is a person who uses a wheelchair. i think there are proper ways to say things to/about other people and then there are the words you use for yourself. i don't want to be owned by the disease or use it like a name. i am not the disease just like i am not my sexuality. both those things are only a part of who i am. celiac disease and i just happen to coexist as best we can in the same body. given that, i'm not going to jump down somebody's throat if they use words i don't like, but i would let them know and why.

    your diseases are much different than mine and yet they have similar affects on our lives. we both have multiple chronic conditions and our own personal journey and stories. please keep sharing it, it makes me feel less alone.

  2. ankle surgeon keeps calling me a rhuematoid and every time he does it I kind of look at him weird.

    I guess I know I have RA but I've never heard someone put it quite that way before.

    I agree if someone is defensive about being called a lupie it's probably because they haven't quite accepted their illness.

    That said I seem to be stuck somewhere in between accepting my RA and wanting to fight my own body to get rid of it.

    And this after 38 years. Does that make me a really slow learner?

    Keep sifting through those thoughts, it's nice to know I'm not the only one feeling this way.

  3. This was an eye opening post for a non-chronic illnesses sufferer to read. Thank you for sharing your thoughts on this.

    Interesting point(s) about the breast cancer/bra color facebook status. I understand the concern by the protesters, but personally I think it was a creative way to get women to, at the very least, think about breast cancer. Who knows, perhaps a few even did self breast exams as a result of the silly viral game.

    That aside, thank you again for sharing this post. It was eye opening.

  4. I really like what you said about "owning" our illness and making it visible!!!!