This is a blog post by Laurie Edwards, my friend and author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties . I asked her if I could reprint it here since is related so much to the article I just wrote about “You’re too Young to be that That Sick!”
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Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness. So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer in Your 20′s and 30′s, I was excited to see someone else focusing in on the younger adult population…And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties emerged. “But you’re too young for this!” How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.
One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.
Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.
“You’re much too young to be so ill!? “Well, don’t look better! I’m so glad you’re illness has passed.” “Hey, let’s go to the football game on Saturday and then afterwards there is a party you just have to come to!” “You’re in the hospital again? What’s wrong now?” If you are in your twenties or thirties, chances are you’ve heard a few of those comments and felt a twinge of awareness of just how different life is at twenty-five with an illness versus being twenty-five and being healthy.
National Invisible Chronic Illness Awareness Week is featuring twenty free online seminars this week, September 8-14, 2008, to encourage those who live with illness, and provide tools in learning how to best manage their illness, including some of those emotions that come with it. Each 45-minute seminar will be live via Blog Talk Radio at www.invisibleillnessconference.com.
National Invisible Chronic Illness Awareness Week is honored to have some of the best chronic illness advocates—who happen to be under the age of forty—participating in their guest line up.
Overcoming Self-Defeating Behaviors will be presented by Jenny Prokopy, founder of ChronicBabe.com, a web site that reaches thousands of women with message of hope, teaching them how to maintain a sense of self despite health-related limitations. “I love helping others,” says Jenni, “and I know I have a commanding message of hope and inspiration to share.” (Wednesday, Sept 10, 12 p.m. pacific)
Friendships, Dating and Marriage: Can it All Come Together When You are Young and Chronically Ill is a workshop not to be missed! Laurie Edwards, author of the new book, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties” (Walker) is also the founder of AChronicDose.com. She teaches writing for the health professions at Northeastern University in Boston, MA. Living with illness since her childhood, she gives a unique perspective to everything from dating to the struggle to emotionally separate from her parents. (Friday, Sept 12, 3 p.m., pacific)
Diagnosed with rheumatoid arthritis at the age of 24, founder of Invisible Illness Week, Lisa Copen sees these workshops as a vital part of reaching out to the needs of the chronically ill. “When I was diagnosed and attending support groups, everyone I met who had arthritis was in their sixties or older. It felt very lonely, as well as difficult to make life-altering decisions about careers, marriage and more, all with the new influence of an unpredictable illness.”
All seminars will be hosted via Blog Talk Radio for forty-five minutes, and listeners can call in with questions during the last fifteen minutes. See dates and times for additional seminars at www.invisibleillness.com, which will be recorded and archived.
Many guests have donated free items or services, which will be given away in prize drawings. Bloggers are invited to participate by blogging on invisible illness topics September 8-12, 2008 and to download the “I’m blogging for Invisible Illness Awareness” badge from http://www.invisbleillnessblog.com .
National Invisible Chronic Illness Awareness Week was launched in 2002 by Lisa Copen, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It is held annually in September and is sponsored by Rest Ministries, Inc., the largest Christian organization that serve the chronically ill.Read Full Post | Make a Comment ( 1 so far )
I’m happy to participate in Invisible Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.
Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”
This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.
(And yet I assume they are noticing or caring, so really, whose problem is it?)
I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?
But there’s more this invisible illness phenomenon, something I touched on in last year’s post on
Seeing the Scope of Invisible Illness–the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.” (And yet I am assuming they are noticing or caring, so really, whose problem is it?)
It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.
So in the end, parsing out the implications of invisible illness leads me another equally powerful word:
It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.
Invisible Chronic Illness Awareness Week is important because you can never be “too young” to be sick!
Laurie Edwards is a lifelong patient with multiple chronic illnesses. She is a health journalist and author of the newly published Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (Walker), and runs the award-winning health blog www.AChronicDose.com. She has a BA from Georgetown University, an MFA in Nonfiction Writing from Emerson College, and teaches advanced writing for the health professions.Read Full Post | Make a Comment ( 3 so far )
Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.
All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”
Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .Read Full Post | Make a Comment ( 1 so far )