Thursday’s Workshop 2 Parts [1] Invisible Disabilites [2] The Joy of Friendships

Wayne and Sherri Connell shared from their hearts about marriage when chronic illness is a part of life as well as information about their role as invisible disability advocates.

Then Lisa interviewed Jenni Prokopy, Christine Miserandino and Kerri Sparling, who are all well-known in the illness community due to their blogs, and they shared in a lively discussion about the friendship aspects of chronic illness.

All of them still take it one day at a time when it comes to learning their limitations and what they can do. Christine calls her time after an event that takes a lot of energy “preparing for a crash landing.” They discussed how important it is to have friends “in person” and stay connected, as well as friends online and how helpful they can be in our journey of coping with illness.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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You are Too Young to Be That Sick! Chronic Illness & Young Adults

by Lisa Copen

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.

Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.

With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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The Battle with The Mirror When Living with an Invisible Illness Even I Cannot “See”

By: Jamee Tyree Miller

You know there are times where the inside just does not match the outside. If you have ever watch What Not to Wear (I love me some Stacy & Clinton), on just about every episode you hear them say that they want the beauty on the outside to match the beauty on the inside. So they work and change and fluff the participant until she (and sometimes he) feels as lovely and confident about their outside as they do their inside. Their lovely $5000 new wardrobe shines as brightly as their personality. You’ve got to love a happy ending.

But what if you have the reverse problem? What if you could wish that your insides looked as good as the outside? After my diagnosis, I was so happy to find Butyoudontlooksick.com. Finally to find that someone else had heard that phrase as much as I had!

If I had a dollar for every time I heard, “But you look great/happy/healthy/etc” after honestly answering the dreaded question, “How are you today?” I would be a millionaire and living on an exotic island somewhere. You can only hear it so many times before you just begin lying and saying “Fine” and moving on.

I even sat in class once and we had a visiting speaker who shared about faith and health and he made the statement that everyone in class was healthy as we were all able to sit in class, yada, yada, yada (I’m not sure what he said after that because I was really fighting the urge to throw the stapler at his head).

So while others are trying to figure out how to get their hair/clothes/etc to reflect whats on the inside, I’m trying to figure out if it is ever possible to make my insides catch up with my outsides. I finally found a hair cut and color that I adore. Weight loss has helped me feel more comfortable shopping for clothes. And I’m finally starting to get a handle on my “style.” So while its nice to hear “You look fabulous,” I just wish I could answer, “Thanks and you know what, I FEEL fabulous.”

Sometimes I wonder if I shouldn’t just stay frumpy so that its more “believable” that I’m sick. Maybe add some extra light powder so I look extra pale and leave my hair a hot mess. Maybe then I won’t get the funny looks (followed by eye rolls on occasion) when I explain why I can’t do x, y, or z because I’m in pain or nauseated or you can fill in the blank.

But I’ve come to a point where I’m not ok with that. This post by Stephanie, a guest writer at BYDLS, “Confessions of an Unapologetic High-Maintenance Spoonie” gave me a boost in confidence that even though I’m a “spoonie” and my insides don’t quite add up to my rockin’ outsides, that its okay to be above the frump–even if it means getting the side-eye everyone once in a while. One day that may be true. I may feel as good on the inside as I do on the outside.

I’m still holding out hope for a cure (well, a cause first then a cure). There may be battles with the mirror but in the end I’ve won the war. I am more than my illness. So in the meantime, I’m rockin’ a new ‘do and some new jeans (and maybe some heels one day!).

Jamee is a wife, a mom and a follower of Christ. She says, “I am also a warrior battling multiple chronic illnesses. In life, I have learned that sometimes things happen and life doesn’t always go back to the way things were. Instead, you must find a new kind of normal. ” Read her blog A New Kind of Normal.

Note from Lisa: We’ve all felt the way Jamee describes above. If you need a smile watch this popular video going around the internet of a little girl giving herself some affirmations!

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