Lupus Awareness Month: Not Here For Your Entertainment

In the previous blog, I listed the lupus that I know. Knowing your enemy, of course, is the first step in defeating it. But the problem is you can’t defeat lupus. You’re welcome to try. I’ve done my share of trying. Most lupies probably do at some point or other. But lupus is part of my body. Those white blood cells that attack me are MY white blood cells. When I try to fight it, I end up in a bigger mess than ever. Fighting requires more energy and creates more stress, which makes me more tired and sick, and it continues in a horrible circle.

I don’t want to fight myself anymore. My body does enough of that for me. And society isn’t exactly my ally. I find it easier to work with lupus than to try to destroy it. I focus on shaping my life around what the wolf allows me to do.

I get tired of hearing people ask how to get more energy or how to regrow hair or how to safely get a tan. I know those things are cherished in this society. But lupus takes them away, and you can’t get them back by wanting or praying or taking a drug – at least not yet. I prefer to deal with what’s here, right now, and what can be done.

It takes a long time to get to the point where you accept radical changes in your life. It takes even longer when we have few sources to guide us. The ones that do exist are often downright wrong. Where do we as Americans get our cultural knowledge? Mainly from the internet, television, movies, and books. “This is what we do/wear/say/think/be and this is how we do it.”

The internet is notorious for spreading all sorts of incorrect information. There are good places, like medical sites that can provide the latest ideas about lupus and research and treatments. But what do medical researchers know about living with the disease? Doctors treat it, but they don’t live with it. The best internet places are lupus groups and discussion boards. Talk to other lupies. Find out what they do, how they live. Ask them questions. They (we) know more than any doctor about how to cope with this disease.

As for books, nonfiction can help, as long as you find recent editions. When I was first diagnosed, the only book I had to look at was an old medical book my mother had.  According to its authors, once diagnosed with lupus, a person had 10-12 years to live.

It was an old book. Luckily things have changed since its publication. 

Movies, TV, or novels exist to entertain, not to instruct. I’m not sure the writers even know the difference between a chronic illness and an acute one. When they feature a character who’s sick, the storyline seems to fall into one of four categories:

  1. Character faints unexpectedly, goes to hospital, doesn’t flinch when she finds out she’s sick. She languishes in a tasteful nightgown and matching robe till she dies beautifully, inspiring others by her unfailing smile and her ability to hide her pain. “We should all be more like her and accept whatever life gives us with good grace.”
  2. Character hides her illness and stuns all the other characters when she dies unexpectedly. She inspires others with her ability to keep her suffering to herself. “We should all be like her and not burden others with our problems. Also, go out and have fun today because you never know when you might die.”
  3. Character spends years being sick but has faith that someday she’ll be well again. Finally one day she finds a doctor who cures her, or alternately she prays to the deity of her choice until she is cured. “We should all be more like her because she never gave up that one day she would be healed. We, too, should never give up on our dreams.”
  4. Character has a piteous background, including child abuse, rape, addiction, and all sorts of other terrible things. When she gets sick, she coughs and bleeds through back alleys and homeless shelters until at the last minute her long-lost loved ones find her. They are too late to save her but at least she dies surrounded by family. Her story does not exist to inspire others but instead is a cautionary tale. “See what happens when you abuse children? It causes them untold misery.”

Lupus is not an entertaining tale to amuse people for a couple hours. What we have is an incurable disease. That’s why it’s so important for us to learn what lupus is, so we can sort through the fairy tales and the reality. Fairy tales never cured anyone. Only through reality can we hope to manage the disease, and ultimately – hopefully – find a cure.

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  1. #1 by Rachel Block Smith on May 28, 2015 - 9:21 am

    Thanks again for sharing your experience with a very complicated disease. I learned the most about dealing with my Hashimoto’s through other patients, usually online forums and current nonfiction books, NOT from doctors. All of the improvements in managing symptoms have been because of ME researching and finding out from others what can help. No medical doctor has ever recommended any supplements or diet/lifestyle changes to me. Frustrating!

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