Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

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*Source: Chronic Care in America: A 21st Century Challenge Revised

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I have made many friends this way, and while these alliances have become a cornerstone in helping me deal with my own illnesses, I find that I continue to do battle on a daily basis with the “outside” world, those in my immediate surroundings who are not chronically ill.

Here is an example:

Earlier this summer, I became acutely ill with a cough that I couldn’t shake. And it wasn’t until I was hacking up a lung that “normal” people started to take notice.

“Oh, are you sick,” they would ask. “You sound sick.”

And what I really felt like saying was, “I’m sick 100% of the time. This is just the 1% you’ve decided to notice.”

This is the exception rather than the rule.

The irony here is that it’s what was going on inside of me that matters. It wasn’t the fact that I was coughing up a lung (or at least sounded like I was). It was the fact that this occurred after going to the hospital for a doctor’s appointment, after riding the city bus. It is, in fact, the very invisible nature of my illnesses that were at play here. They had just decided to show themselves in a very visible, vocal way.

Those events wouldn’t cause “normal” people to get sick.

But if doctors haven’t been trained to look much deeper than giant, flashing tumors, why would we expect the rest of the world to? In many ways, illness is in the eye of the beholder.

My own mother refuses to see me as a “sick person.” But the truth is, these illnesses are my life. My life has become these illnesses. And for better or for worse, I live out each day, good or bad, because of these illnesses.

Yes, ignorance frustrates me. Because our world hasn’t been conditioned to believe in the possibility that young people can be sick – because this plays on our worst fears that the world is not a just, fair, or kind place – and that people in the prime of their lives can be struck down with no warning, with seemingly no reason, and lives can be forever changed, altered beyond comprehension.

And it also frustrates me that by virtue of that inability to understand, I am supposed to be strong, brave, resilient – any number of adjectives that describe youth and longevity. Yes, somehow, on the days when I am in so much pain that I can’t lift a half-gallon of milk to pour for my cereal, I am supposed to be strong and brave, and think that this is just some adolescent phase that I’ll grow out of?

But even for someone like me, who blogs about my illnesses, whose posts are fed through facebook, there are times when invisibility can be a good thing. When I travel to California in August, there is a very good chance that I will be wearing a mask on the plane.

I haven’t been on a plane in nearly seven years. And I’ve never had to wear a mask before. Anywhere. The thought fills me with dread – everyone is going to look and me and wonder what’s wrong with me. But given my susceptibility level, it seems like a prudent measure that I need to take.

It makes me realize that sometimes, invisibility is a luxury. The fact that I don’t have to wear illness on my sleeve all the time, while this tends to promote ignorance and unfeeling, also thwarts questions, long glances of sympathy and pity. It allows me to be in my own insular world of lupus and rheumatoid arthritis, while the rest of the world is kept at arms length, think that everything is just fine.

You don’t know what you’ve got ‘til it’s gone…

National Invisible Chronic Illness Awareness Week is important because no one is immune to illness – it can happen to anyone, anywhere, at any time – and by sharing our stories, we help to show that it is possible to live in the face of illness.

Leslie Rott is 23 years old. In April of 2008, at the age of 22, she was diagnosed with lupus and rheumatoid arthritis. 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, which chronicles her journey with chronic and invisible illness.

If you don’t have a blog:

• You are still welcome to submit a “blog post” and be a “guest blogger” here at the Invisible Illness Week web site. We recommend reading some of our past blogger’s posts for ideas, but we are happy to consider anything of interest to those with invisible illness. We’d love to hear your reflections, ideas, stories, and more.

If you do have a blog:

• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Be a host for our founder’s Blog Tour (More information coming soon but you can sign up here now if you want. Details will be emailed to you). Lisa will have different interviews in text format that you commit to posting on a certain day. Do you know friends who blog who may be interested? We’d love to spread the word about II Week all through the blogosphere of many illnesses, from cancer to autism, migraines to arthritis, celiac disease to other rare disease.
• Submit your blog post in July for an August edition of Grand Rounds, the biggest (and first) medical blog carnival online. (Read more about this here.)
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog if you want including our 2009 Invisible Illness Week logo.

Thank you for your help! We really couldn’t do it without you!

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It is a general rule of polite society to inquire how another person is feeling. Sometimes this is a formality, asked but not wanting an answer. Lately, I find myself selectively answering some people, “I’m just fine.” When I know I am bothered by the muscular and bone aches. Those who I know best get the more accurate, truthful version.

I know God doesn’t want us to lie about something as vital as our chronic illnesses. Also, I don’t want anyone’s pity or be thought as one wanting attention I felt guilty when I realized I was telling fibs to half the people I see.

Several years ago, I went through a prolonged time of emotional stress. I couldn’t share with my friends because it was very personal. I found myself saying, “Thank you” to those who inquired about how I was.

The phrase caught a lot of people off guard. For those who would ask, “What does that mean?” I told those people. The two words were verbal shorthand usually conveying three options for them to decide which applied.

1.) Thank you, but I can’t talk about it.
2.) Thank you, but we don’t have enough time to go into it.
3.) Thank you for asking. I need your prayers.

As we learn to cope with these unseen ailments, we can become either better or bitter. As for me, I want to be thought of for my good habits and nice deeds I have been able to do and not for the grumbling.

I found a scripture that tells me how I can answer King David wrote a poem to God. “Let the words of my mouth and the meditation of my heart be pleasing in your sight, O, Lord, my Rock and, my King]”  (Psalm 19:4)

Sometimes, I can honestly say I am doing better. Other times, I answer with doing okay. But then, I am still not being honest with the other person or with myself. I might, for a while, revert to replying to those who inquire about my well-being with those two small words, “Thank you.”

National Invisible Chronic Illness Awareness Week is… necessary, very necessary.

Cecelia first experienced arthritis-like symptoms when she was 22. That next winter, she took a nasty fall on ice and injured her lower spine. Her most recent round of invisible illness caused her to retire earlier than she intended. It was only in Sept. 2008 that she was diagnosed. Visit her web site here.

Here are some people who, like you, “don’t look sick.”

You ask me if I’m sick?! Where do you get that from? I’m not sick. I have never been sick. And I will never be sick. Not in the way you ment it. All that happened, is that I have got an issue with my balance, a balance disorder. Or no, not really. I have got no issues whatsoever with whatsoever. Actually balance has got an issue with me.  JudyDonnelly.com