Lupus education - you know where it has to start

So I failed to mention one key point in Friday's post. While I think it's fair to loosely compare the two conditions of pregnancy and lupus (particularly because I seem to have caught a "case" of both), I realized that there's one major difference separating the two - that being common knowledge of the condition itself.

Tell me -

How many people do you know that actually understand what lupus is?

How many people could tell you at least three symptoms of the disease?
(Granted they have about a gazillion to choose from.)

How many people could rattle off even one consideration (sun exposure, compromised immune system) of having lupus?

And how many people could say that they've seen, read, or heard a radio, tv or magazine ad for lupus that conveys what the disease is?

(Now, that last one is, in no way, a knock against the Ad Council, who as of late has done a fabulous job of spreading awareness about lupus through their ad campaign. But it's tough when there's so little talk of the disease in general. It's hard to rely on a few PSA's to spread the word about a disease that more than 1.5 million people nationwide (and more than 5 million worldwide) are said to have.

Now - there's no pity party to be thrown here. No one's dropped the ball, and no one is shirking responsibility. If someone isn't knowledgeable of the disease, it's certainly not their fault. In fact, I say we, as lupites, are at fault if we don't take 30 seconds to educate someone who might otherwise not know what the disease entails. I know, I know - like you need one more thing to do. But do you really think that a 30-second speech is going to slow you down, when it might possibly educate someone and inspire/encourage/motivate them to do something about what they've just learned about?

Think about it - it's not as though you need any practice in figuring out what to say.

You know the symptoms like the back of your hand - complete and utter exhaustion, arthritic pain and swelling, fevers, swollen glands, organ involvement, rashes, hair loss, mouth sores, chest pain, blood count issues, loss of appetite, etc.;

You know all too well the possible triggers of a flare- stress, sun, infection, surgery or other procedures, exhaustion, certain drugs, even the common cold, etc.

You know what you'd like others to know about the disease - that it can make it difficult to work 40 hours a week, to go a whole day without napping, to get dressed in the morning, hold a tube of toothpaste in your hand, pick up your baby, make the bed, drive a car, walk from the parking lot to the store, run an errand, bake a batch of cookies, etc., etc., etc.

And you really know that you'd like people to understand that it can be a life-threatening, life-altering disease that's chronic, that won't ever go away, that most likely will require you to be medicine-dependent for the rest of your life, and that has forced you to make changes in your life in order to accommodate the illness.

Of course, if you're up for taking 30 seconds out of your busy schedule now and again, you can also let them know that you appreciate them allowing you to tell them a little bit about the disease, encourage them to pass on the information, and assure them that no, not everyone has as mild a case of lupus as their great aunt once removed did, who never seemed to be affected by the disease at all. (You know that happens at least half the time!)

Remember, though - no complaints, no pity party - just the facts. Perhaps as though you're talking about someone else, so that when they realize that it's actually you who battles those symptoms and triggers and issues on a daily basis, they can be even more impressed that you're talking about it, and taking steps to teach others about it, too.

So get your speech ready - the next time a stranger (or even someone you know) asks about that rash, your hair loss, your fatigue, or that cane, perhaps you can say, "Have you ever heard of lupus?" And if they say, "no," that's your chance to break out your :30 spiel.

And I'll look forward catching the tail end of it as I walk by!


Anonymous said…
This spring I was in a head-on collision. Luckily it was on a side street, low speed. No one was seriously hurt, but my car was totalled. The best thing to come out of the car crash? An explanation for the pain and stiffness I feel every morning. All of my very concerned friends and family kept saying, "oh you're really going to hurt tomorrow." And I did, but it wasn't any worse than what I deal with every day. The only difference was the that the pain and stiffness was just in a very specific place where the seatbelt crossed my chest and shoulder versus in my hands, feet, knees and hips symmetrically (seronegative RA). They couldn't understand why I was so chipper after a car crash, but it was because I was so used to that level of pain and I finally had a good explaination of what I normally feel in the rest of my joints.
Maria Pfeifer said…
Hey, Sara,
I am in full agreement about PSAs, in general. We focus a lot on personal stories, as well we should because we all experience lupus in our own way. However, it is a lot easier for people to then misunderstand the magnitude of how many live with it.

I've heard of "elevator speeches" or "conference" and "writing" blurbs that are power-packed with concise info while you have that window called "attention span". Whatever you want to call it, I think it's important to practice it regularly in order to keep it fresh in my mind and genuine, because there is constantly an opportunity to jump in with one.

Above all, I make sure to thank the person for listening. We are used to the ugliness of living with it, but it really isn't easy for people on the 'outside' of our experiences to know what to do with it. Any time they give is gold towards building support.
Aymie said…
In answer to those (rhetorical?) questions, only one of my friends knows exactly what lupus can do, and that's because her mum's had it for 20-odd years. When I'm sore, the rest of them just look at me with a sort of confused pity and don't seem to understand just how bad it can be even after me telling them.

I honestly think that's the worst part of lupus. Well, that along with the pain, photosensitivity and tiredness...
Sara Gorman said…
Anonymous - Hope you've fully recovered! Ideally, though, you now have a springboard to explain your everyday pain...what a perfect example to use to help people try and "get it". Most people can even visualize the pain involved in a car that's even better.
I recall writing something in my book about every bone in my hands, wrists, and fingers "feeling like they'd been crushed to bits..." That's along the same lines, right? :) Thanks for sharing!
Sara Gorman said…
Maria - Thanks so much for your thoughts! So glad you agree - and I think it does keep us sharp and on our toes to constantly be looking for opportunities to share our experiences with and, more importantly, our knowledge of lupus with others.
Sara Gorman said…
Aymie - Some days, it's hard to choose the worst of it, isn't it? :)

Hope you know you're not alone. I devote a whole chapter in my book to dealing with others...I found it to be such a challenging part of the process. But learning when and how to talk about the disease with others was so important to my ability to move forward. So glad you have a friend who understands. That must make all the difference! Thanks for sharing - SG

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