Reevaluate Your Methods of Getting What You Want

The following is an excerpt from the book Despite Lupus. This blog post was submitted by the author and is used with her permission.

Since the day of your diagnosis, you’ve wanted one thing only: a life free of lupus. You’ve prayed and begged for your chronic illness to go away, knowing that would be the easiest way to regain your familiar way of life.

You may even have made a few bargains along the way, saying “If my disease would miraculously go away, I promise I’ll never [blank] again.” But frustration has set in because your wishes haven’t been granted. In fact, it may seem like your pleas are being ignored. You wonder what part of “Heal Me” God doesn’t understand. Perhaps this is a better question to ask: what part of the puzzle don’t you understand?

Right now, you see a complete physical healing as the only assurance of regaining a life worth living. But what if a perfectly-functioning body isn’t yours to have at the present time? More importantly, what if it doesn’t solve the larger issue that looms over you – the long-term emotional effects of being diagnosed with a chronic illness?

You’re a different person than you were before lupus arrived; denying that is ignoring the essence of who you have become. The remedy for the hopelessness you feel due to your physical ailments may lie in an emotional contentment you haven’t yet considered.

I found the same to be true in my struggles with lupus. Every day for years, I prayed that God would heal my broken down body. I wasn’t expecting a miracle, but I had come to believe that, if I were patient enough, I would get the physical healing I wanted.

As the disease worsened, I grew more discouraged. Why wasn’t God listening to me? Maybe I wasn’t being clear enough. Or maybe it wasn’t a healing I needed, but an understanding of what was realistically in my future. By changing my focus, my frustrations caused by having made such little physical progress went away, replaced with an appreciation for the emotional acceptance I instantly was capable of achieving.

“Prayer is not asking for what you think you want, but asking to be changed in ways you can’t imagine.”

Instead of perpetuating the short-sighted, limited notions of how you can physically mend your broken body, start working toward that which can be realized immediately – a healthy acceptance of where you are in your life today. You’ll no longer be chasing a hopeless, unreachable goal of living well without lupus. Your objective will become living well, despite lupus.

***

Excerpt taken from Sara Gorman’s book, Despite Lupus: How to Live Well with a Chronic Illness. Log on to www.despitelupus.com to find out more.

Quote taken from Anne LaMott’s book, Grace (Eventually): Thoughts on Faith, as reprinted in the “The Up Side” feature of the May 2007 issue of Guideposts magazine.

Sara Gorman was diagnosed in January of 2001 with systemic lupus at the age of 26. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. Thus, she made it her top priority to start living well, despite lupus.

The steps she took to regain the health and wellness she’d lost are outlined in her book, “Despite Lupus: How to Live Well with a Chronic Illness.” Quitting her job, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus. www.despitelupus.com

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• Finding Contentment (chronicillnesspaindevotionals.wordpress.com)

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You Don’t Look Sick – Poem

You Don’t Look Sick
By Joanne Ryder

You don’t look sick,
they told her
propped up in her hospital bed.
Would she mind having her
photo taken for their
public relations campaign?
She smiled and they photographed
a model patient in the endocrine ward.
She didn’t have a humpback,
or thickened skin, tight and dark,
or a head larger than one should be.
She looked just like you or me
or anyone visiting from the outside.
The doctors thought her parathyroid gland
might be overactive or perhaps underactive.
That could explain her symptoms:
tiredness, aching joints, the times
I came home from school
and found her crying, lying in bed.
But in her photo, I see her smiling;
You don’t look sick, Mom,
but looks are deceiving
and she knew better.

My mother had an “invisible illness” for nearly 50 years. It was diagnosed at times as RA, Lupus, parathyroid problems, and a variety of other ailments.

Because she was chronically ill for so long, some of her friends lost empathy and couldn’t believe she was still sick. That was as hard for her as the illness itself.

I wish I had known about “invisible illnesses” when she was alive and wish that she could have been involved in the internet community of others like her. She would have enjoyed sharing with others and listening to their stories as well.

I wrote this poem about an experience when she was asked to take part in an experimental treatment in an endrocrine ward of a hospital. Because she “didn’t look sick” she was chosen to be photographed as the poster patient to raise money and awareness for the hospital.

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Unlikely Chameleons, Living with an Invisible Disease

It’s funny. I’ve always worried a lot about fitting in, even before I was diagnosed with lupus and rheumatoid arthritis. About what other people are going to think of me. More recently, about the visual cues that signal illness.

Ironically, though, one of the things I really haven’t bothered to hide are the bruises I get from having blood drawn. Whether it’s two vials or 20 doesn’t seem to matter. I’m fair-skinned and my prolonged adventure with steroids has increased my bruising ability.

Similarly, It’s pretty hard to hide a cannula that’s in your arm for three days while you’re getting solu-medrol infusions for two hours each day. Yes, this scheduled in between the final exams and papers of my first year of graduate school. Just one of the many ironies that comes with being diagnosed with an invisible, chronic illness at the age of 22.

I know that for some people, my friends included, this is just too much “medical stuff” invading their perfect world of health and harmony. I know these things don’t make the “typical” graduate student.

Certainly, though, there are things I have made an effort to hide. The cystic zits that invaded my formerly acne free face while I was on prednisone was one thing. I finally decided to invest in some good cover-up, not so much for other people, but for myself. It’s hard enough to do deal with a changing body, both physically and mentally, let alone a changing face.

On the other hand, if we can’t show our scars and our wounds, then people are only willing to accept the healthy versions of ourselves. And being honest with ourselves, this is not always the way things are going to be. It may be the image we want to project, but it’s hard to project a false image built on lies when we don’t have much control over the situation.

There seems to be a constant conflict between fitting in and sticking out like a sore thumb. On the one hand, no one wants to wear their limitations on their forehead, displayed for all to see. On the other hand, fitting in perfectly and not “looking” ill has its own set of complications.

Sometimes people don’t believe that I’m sick or they don’t understand the severity of the situation. People don’t understand why I can’t just take a Tylenol and get over what is ailing me.

I think it’s especially hard for people my age to imagine something lasting forever. I try to explain that I’ll vacillate between better and worse, but I won’t ever be “perfectly healthy” again. This is something, that, especially when I appear so seemingly healthy, people find impossible to understand.

I think what I’m starting to realize is that just as I don’t owe anyone an explanation for why I became a vegetarian over six years ago, I don’t owe anyone an explanation for any of this. Or why I may look fine, but feel awful. Do you know how many people have told me that they have friends who have Lupus and “are just fine”? I used to feel like that was a personal dig. Like, if other people have this disease and “are just fine,” I should be, too. But I started thinking that “just fine” is an assumption in the eye of the beholder.

These people may look “just fine,” and it’s not to say that their disease could be in remission, however, it seems to me that the more likely story here is that people think they look fine, and, therefore, assume that they are.

For those who don’t know that I’m sick, I don’t just go blurting it out for fun. I don’t usually say anything unless it becomes necessary. But the truth is, pretend or not, lay it all on the line or keep it all inside, I’m not your everyday graduate student attempting to get a Ph.D. It’s not an easy thing for anyone; it’s certainly not going to be an easy thing for me.

Certainly, I hope that I can finish my program “on time,” which is just a euphemism for “before my funding runs out.” But the thing is, I don’t have the answers for when I am going to be “ill” or “not.” And with the unpredictability of Michigan weather, it means I’m kind of out of luck as far as “climate control” is concerned.

Sometimes I wonder, though, if our lives would be easier if we didn’t want so badly to be noticed. There are times when the ache to be normal is so deep, I would do almost anything for one day of not being ill. I often feel like I am caught between two worlds.

On the good days, I feel like I don’t quite fit in to the world of the chronically ill, even though I know that for most of us, the severity of our diseases ebb and flow. On the bad days, I definitely don’t feel like I belong in the world of the healthy. I don’t feel understood at all. And it’s on these days that I realize that our need to be noticed and acknowledged is of the utmost importance. Our silence can have deadly consequences.

National Invisible Chronic Illness Awareness Week is worth celebrating because it brings awareness and much needed attention to issues that profoundly affect the lives of many people.

Leslie Rott is 23 years old. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in sociology at the U of M. She currently authors the blog Getting Closer To Myself (gettingclosertomyself.blogspot.com), which chronicles her journey with rheumatoid arthritis and systemic lupus.

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