Seeing her way through an invisible illness

[SunsetParadise19]

Seeing her way through an invisible illness
By Jeff H., Staff
Intelligencer Journal

Published: Nov 08, 2007 2:05 AM EST

LANCASTER COUNTY, Pa. - Sitting cross-legged on a love seat in her family's living room, Gwendolyn W., 19, tells me stories of a happy, normal childhood ? school, pets, ballet recitals, flute lessons ? all prelude to a bewildering health crisis that daily challenges her to find happiness in a life taking a detour from the normal.

One moment Gwendolyn was participating in gym class at PMHS. The next she was on the floor surrounded by classmates who saw her buckle and faint for no discernible reason.

That was three years ago, and since then Gwendolyn has learned more than she ever wanted about the capriciousness of health and the limits of medical science.

Doctors tell her something is wrong with the way her body regulates automatic functions such as digestion and blood pressure.

The problem is called dysautonomia, and for Gwendolyn it means dizziness, nausea, fainting and a heavy fatigue that counters her longing to be active like the dancer and marching band musician she was.

Battling tiredness

No procedure or pill can make her well. There's only hope time may lessen the symptoms. Mostly Gwendolyn is resigned to doing what she can and to not criticizing herself when her body refuses to do the things she wishes it would do.

Gwendolyn is an easygoing, soft-spoken, sandy-haired young woman who reads mysteries and listens to Keith Urban. During our conversation she's wearing a purple sweater and jeans.

When Molly, the family bulldog, leaps onto the love seat, Gwendolyn gives her a hearty welcome. But over the course of my visit, Gwendolyn tires. She reclines, wrapped in a comforter, her head on the armrest.

Gwendolyn tells me a good day is when she has enough energy to empty the dishwasher. A very good day is when she finishes the dishes and feels up to doing a load of laundry. Those tasks accomplished, she knows she'll need a nap.

More frequent than the very good days are times when it's a struggle to get out of bed at all, much less hang laundry to dry.

Gwendolyn tried partial school days and a lightened load to finish high school, but what enabled her to get to graduation last spring was district approval of an in-home instructor.

Gwendolyn's illness comes with a frustrating double whammy. The first blow, of course, is being sick most of the time. The second is knowing some people doubt her illness and think less of her.

It's hard for her to explain an invisible illness. There's no skin lesion, no abnormal shadow on an X-ray, no brace she must wear.

Seeking acceptance

People wonder why Gwendolyn can't do more; some have even questioned her about it. Or they think they can make her feel better by speaking of their own tiredness.

"The main thing is she wants to be believed," said Gwendolyn's mother, Valerie, who has been a mainstay of support.

Cheering her on from halfway around the world is Sophie H., a young New Zealander who also lives with dysautonomia and who keeps in contact with Gwendolyn by instant messaging.

"She is really positive," H. said in an e-mail to me, "and also knows that it's good for me to ? vent sometimes and just let it all out."

Knowing she's not alone with her unusual illness helps Gwendolyn persevere.

She is looking into taking a class at Harrisburg Area Community College and seeing how it goes. Her dream: a nursing career.

This summer, Gwendolyn attended a conference in Virginia for young dysautonomia patients, and the highlight was the Dizzy Dinner Dance.

The music was low and the mood light, and no one thought twice when some chose to move to the Macarena while sitting on the floor.

[xxBrittany]

Thanks for posting this.