Today I am giving the lovely, Marilyn Morris the floor to talk about her experience of sitting on a Q & A Panel which aims to help people who suffer from Lupus. In her book, Diagnosis: Lupus: The Intimate Journal of a Lupus Patient, Marilyn shares her journey of living with chronic joint pain, frustration, anger, and grief, revealing her unexpected spiritual growth and gratitude for life, in the hopes that her story may help other Lupus sufferers.
Without further ado, I give you a talented author, a wonderful lady, and a friend--Marilyn Morris.
My Experiences on a Q&A Panel
Marilyn Celeste Morris
I was reminded once again of its quirks at a lupus symposium
held last week at the University of Texas, Dallas campus. Of about
one hundred persons there, I can safely say, none of us had exactly
the same experiences at the same time. Several were newly diagnosed, bewildered by the suddenness of their illness, and the shock of knowing there is no cure and treatment varies in each individual.
Most of us, however, rely on the tried-and-true use of steroids (to reduce the swelling of joints) and Plaquenil, an anti-malerial that was discovered quite by accident to have a remitting effect on lupus activity. However, the use of steroids causes extreme weight gain with a "moon-face" effect, thus causing yet another crushing blow to the patient, and taking Plaquenil requires a yearly visit to the ophthalmologist to ensure vision is retained. As I succinctly summed it up after my initial diagnosis and given a prescription for Plaquenil with the caution that I might lose my eyesight: "Oh, I get it. I can either hurt or go blind?"
There are days I still feel that way – conflicted and afflicted. Conflicted about the treatment for lupus, and afflicted by its limitations on me for that day. And yet, I have learned to rely on those last two words as gospel truth: "That day." It won't last forever. Whatever is going on inside my body will not last forever. It will either get better, get worse, go away for a while, or I can learn to live with it, one day at a time.
At this point I must relate the experience I perceived of one person in the audience of lupus patients. Although she had been diagnosed at 11 years of age, and she is now in her mid-twenties, she is still seeking answers. How long will this last? Will I keep getting sick with the same symptoms? How can I file for disability when they tell me I'm not sick enough?
We on the panel and in the audience attempted to answer her questions, but it soon began to dawn on me that she wasn't willing to listen to our answers.
She wanted attention. For her own particular set of symptoms, for that day. And we were not set up to deal with one individual's case history at the expense of others. I began to realize that since the age of 11, she had been playing "Victim." And she had no idea she was doing that. Yet in her baby-sized voice, and her singsong questions, she was reverting to childhood. Soon some of us "old timers" began exchanging knowing looks, and the moderator began somewhat unsuccessfully to cut off her incessant questions. Yet how could we squelch someone's quest for answers? After all, isn't that what we were there for?
Yes and no. Yes, we could provide her with the information that we are all affected differently at different times. And no, we couldn't recommend any one treatment that she hasn't already had and she needed to ask her own doctors. In an age where we can pull up an answer to almost any question in the universe by using a Google search, medicine cannot give certain answers to an uncertain disease. And that's a shame.
I know now what I should have told her. (Don't you just love it when you leave an argument or a situation where you think, "I should have said…..?) I was told early on by a very frustrated doctor who told me I "might" have lupus. "You will find that lupus is a do-it-yourself- disease. You will have to become your own best physician."
Our fifteen minute office visit is over. Pay on the way out, please.
The Lupus Foundation of America is the nation's leading nonprofit voluntary health organization dedicated to lupus. The LFA has a dual mission: to provide support and services to all people affected by lupus, and to fund research to find the causes of and cure for lupus. The LFA has a nationwide network of nearly 300 chapters, branches and support groups. Visit www.lupus.org or call toll-free 1-888-38-LUPUS (1-888-385-8787) for more information.
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3 comments:
Wow, great post, Marilyn! You're a remarkable lady.
I continue to be impressed by the good things you are doing for people.
oh i understand what I call the "culture" of victimhood, which is why, as much as I detest being judged by neighbors etc who think I'm jsut lazy, I refuse ot buy a t shirt that says "i have lupus. what's your excuse?"
the day I start wearing that, I know I've given in and gone to the "dark side," the side where you talk to your illness to anyone who will listen, and many who won't, and spend more energy defening your right to be sick than you do living your life to its potential. and ususally, you're not real interesting or fun to be around when your whole world is your illness.
i am generally secretive in public about having lupus, for numerous reasons- mostly that i don't like invasive questions, being judged, people worrying i'm contagious, nad most of all being thought of differently than if i were just "me" anmd not "that chick with lupus." I get to "blend" with the "normal" people and talk about other stuff besides illness.
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