Connect with Other II Week Participants

Do you wish to connect with other participants of Invisible Illness Week? If so, we invite you to join the Invisible Illness Week GROUP in the Sunroom social network of Rest Ministries.

During the week while 4 seminars are happening each day, this is where we will also send you if you want to ask more questions of listeners on a particular seminar topic, if you have questions for the speakers that were not answered during the seminar, etc.

We are asking our speakers to sign in and check to see if anyone needs any additional information. If our speakers have handouts, this is where they will post a link to them.

The Rest Ministries social network, The Sunroom, has over 1300 participants and is a Christian environment for those with chronic illness. We understand that during Invisible Illness Week some of those involved may have different faiths or not have a religious preference. We ask that everyone be respectful of one another. If you do not wish to participate after Invisible Illness Week you can delete your membership.

Another option is to leave comments at the Blog Talk Radio web site where other listeners or the speakers can connect with you.

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Get Ready By Testing Your Computer Speakers

Invisible Illness Week starts 9/14 at 9AM Pacific time in the USA. You will log onto the web site here at Blog Talk Radio.

…and if a program is currently LIVE it will start playing through your speakers.

You can also to listen to the workshops any time at www.blogtalkradio.com/invisibleillnessconf or you can download them from itunes onto your ipod. Just search “invisible illness podcast.”

Now is a great time to make sure your speakers are working!

The only thing that you will need are a pair of speakers connected to your computer! We recommend going to our programs last year that are archived at Blog Talk Radio and clicking on a few programs to see if your speakers are working.

I have logged on to Blog Talk Radio but I am not hearing anything. I can’t get it to work. What do I do?

First, don’t panic. All programs are recorded so it will be there later. Secondly, here is the help section from BlogTalkRadio.com . Make sure your speakers are also plugged in and the volume on your computer is turned up (Start>Control panel> -then look for something that is Audio/Volume, etc)

We have found the support/help at Blog Talk Radio to be very good in helping you find what may be wrong in case you cannot hear the program.

Their blog says

Visit the BlogTalkRadio Help Center – There are two great places to learn more about BlogTalkRadio and how to make it work to your advantage. The first is the BlogTalkRadio Learning Center located on the main BTR site. Included are tutorials, FAQs, screencasts and more, to help make your experience with us as simple as possible. The BlogTalkRadio Help Center, located on the BlogTalkRadio Blog, is a work in progress listing blog posts offering tips and ideas for a positive experience.

Worth noting: Lastly, we have room for 4 callers to call in to the show. You can actually listen to the show this way, but we also want to keep the lines open for callers after the workshop. So you can call to listen, but you may get bumped.

ALSO SEE: FAQ About the Conference | Overview of Conference

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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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

____________

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

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• Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red? (invisibleillnessweek.com)

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54 Ways You Say You Respond to “You look so good!”

“You look so good!”  Over 1200 of you took our survey last year (you can still take it here if you want) and you shared how you respond to this compliment that pulls at the heartstrings.

Sometimes you just have to respond… a smile doesn’t say all that you want to say, but one of the temptations is to use sarcasm in our response.

Most of us can say that it depends on who says it. We may be more likely to smile and say, “If only it were true!” to a friend who doesn’t really get it. To the person behind at us the grocery store who commented about our groceries, we are more likely to say something sarcastic since we don’t have to deal with repercussions of  a stressed relationship.

Just remember that our seemingly justifed bitter comments back at them can only alienate people more and it does nothing to create an awareness of invisible illness. But who of us doesn’t relate with wanting to say a few of these things on the list below?

The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”

Be sure to add your own at the bottom in the comments section!

1. I am hangin’ in there…
2. I am so blessed. God is so good.
3. Drugs are a wonderful thing
4. I have my good days and I have my bad days.
5. I clean up well.
6. I have my ‘good’ days….but this isn’t one of them!
7. Thanks, I wish I felt better.
8. That’s a perfect example of how you can never judge a book by it’s cover.
9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
12. You should be on the inside.
13. Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!
14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
15. …And that’s all that really matters, isn’t it?
16. Powder and paint, make you what you ain’t!
17. It took a lot of work to look like this.
18. It’s God shinning through me
19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
20. And you look so wise. Looks can be deceiving though, huh?
21. I’m having a “good face” day.
22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
24. I’m trying my best to do well OVER my circumstances instead of being under them!
25. It’s up and down.
26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
27. I’m not complaining about my looks.
28. I’m very good at pretending.
29. Good, because if I looked like I feel it would scare you to death.
30. Actually, I still am really hurting…
31. I am 36 years old outside but 85 inside
32. Thank you. I’m on my way to the Oscars.
33. Thanks, I’m grateful for this good day.
34. Things aren’t always what they seem.
35. Praise God, I’m glad that he enables me to look so much better than I feel.
36. Thanks, that’s God’s joy shining through!
37. Have you ever heard of the spoon theory?
38. I am upright which is better the alternative
39. Thanks, want to swap bodies for a few days?
40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
41. Thanks. I like good days.
42. Want to step inside my skin?
43. It’s amazing what a shower can do. I guess I am all cried out for now
44. Thanks…I wish I felt it!
45. I’m not complaining about my looks.
46. I’m very good at pretending.
47. Looks can be deceiving (and smile)
48. Thank God for makeup!
49. Thank you for caring. I try to act like I feel better than I really do.
50. Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
51. I’d be great if it wasn’t for the pain.
52. I’d complain but who wants to listen.
53. If I can’t feel good, at least I am determined to look good!
54. I’m in good shape for the shape I am in!

What do you say? Or what would you say if you could say anything (keep it clean!)

* This list can be reprinted. Please add the following at the end:
This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

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I Never Know What to Say or Do!

Learning How to Encourage and Help Someone with a Chronic Condition

Have you ever wanted to encourage someone with a chronic illness, but it seems like you never know what to say? Moreover, when you finally think of something you just know will make them smile, do they snap back at you with frustration?

Well, you are not alone. Because we truly want to help our friend or family member with a chronic condition, we often try to think of just the right words we can say to make all of the pain vanish from their life. If we can just “fix it” then we will not have to see them suffer anymore. Unfortunately, when we do try to come up with a quick answer, we often end up saying something that seems to irritate or offend our loved one.

It is difficult to understand why they got upset, because to us what we had to say should have been helpful. Nonetheless, if we could simply jump into the life of our loved one, then we would see why our well-meaning comments were not so well-received. Often, it is our intention to help them “see the bright side” of their situation, so they can realize it is “not that bad.” The problem is that we have then failed to acknowledge their battle is very real and we have gone on to minimize its impact.

Sometimes we even try to point out another person who is “worse off” or try to relate by saying, “Ya, I am tired too.” Often, we disregard their limitations by attempting to talk them into doing what they know they cannot or should not do. Because we forget how anguishing is it to be ill and laid up, sometimes we even try to tell them “how lucky” they are to not have to work or clean their house.

What’s more, we cannot resist acting as if solving the problem is so simple when we exclaim, “why can’t you just take this or do that?” Likewise, we want so badly for them to be feeling better, that we refuse to hear the truth and do not allow them to be open and honest with us about what they are going through.

Besides not knowing what to say, we often do not know what to do. We often wish we could do something to help, but do not even know where to start. Our own lives can be so overwhelming and busy that we could never fathom having the time to run arrands, do chores and help clean someone else’s home too!

Nevertheless, what we fail to realize is that what might seem like an insignificant effort to us, may save our loved one an entire day or even week’s worth of energy. For example, just picking up a few things at the store while we are already there and taking out the trash when we drop them off does not take much of our time, but it can make a world of difference to them!.

In all, we can never fully comprehend what it is like to have a chronic condition, with all of the loss and pain it poses. Yet, we know we would not want to feel this way ourselves, so surely we can see what courage our loved one displays! We can even try to remember what it is like to have to put our lives on hold for even just a few days and tell our loved ones how amazed we are at their strength and perseverance!

People with chronic illness/pain would never choose to willingly give up activities they used to enjoy! In fact, they would do just about anything to get their lives back! Therefore, we can rest assured, knowing they will keep fighting, researching and pursuing ways to regain their lives or at least prevent further progression of the disease.

Yes, accepting what is happening to a loved one means having to deal with all of its pain, mourning and changes, but do not sell yourself short! After all, if they are forced to live with it, we can certainly choose to live next to it!

This article by Sherri L. Connell, contains excerpts from the booklet,“But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain!” Copyright ©1997, Revised 2002, The Invisible Disabilities Advocate

This booklet explains how a person can be damaged by an illness and/or injury on the inside, but still “look fine” to others on the outside. It gives detailed suggestions of “what not to say” and explanations as to why. In addition, the booklet provides many examples of “what to say” to be an encouragement and offers practical “ways to help.”

For ordering information and to read more articles written by Sherri, visit The Invisible Disabilities Advocate at: www.InvisibleDisabilities.com Please contact IDA for permission to distribute or publish this article.

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How YOU Can Make a Difference

There are lots of ways to get involved in National Invisible Chronic Illness Awareness Week. In fact, just spreading the word that such a week exists seems to be therapeutic to some of us who are tired of hearing, “Are you still sick?”

We are always updating our web site under the category What to Do – How to Help, but if you are looking for a fast list, here are some things you can do that will all help us a lot! Most have links with more details if it’s not self-explanatory.

Bloggers or Writers

• Write a blog post for our web site as a guest blogger. It can be something fresh or something you have posted before.
• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• 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.

Do You Twitter?

• Follow us @invisibleillwk
• Retweet our tweets to let more people know about II Week
• Use the hashtag #iiwk10 when tweeting
• Tweet out our 20 Things to Say to a Chronically Ill Person and 20 Things to NOT Say to a Chronically Ill Person
  
• Twitter 25 facts about illness in 25 days
  
• Get a Twibbon for your profile photo

Are You on Facebook?

• Join our cause & tell your friends and family The easy address to rememberis http://www.InvisibleIllnessOnFacebook.com
• Whatever you see on our web site that you like… scroll down to the share button and share it on Facebook. It’s easy and helps more than practically anything else you can do to help!
• Ask your friends to join the cause.
• Give a donation to the cause (We are aiming for $1900 to help us cover costs.)

Pray!

• We have a prayer group jut for the week – join us if you’d like.

Do You Have a Web Site?

• How to Put II Week Blog on Your Site
• Add our button to your site!

Buy Some Goodies to Help us Financially and Also Spread the Word

• We have some great II Week items to help you share about your passion for the cause.

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SURVEY: But You Look So Good!… What do you say?

When someone tells you that you look great, how do you respond? How does it feel? For some odd reason, though we don’t want to be told we “look as bad as we feel” sometimes it can seem like our pain isn’t being acknowledged. It’s hard when it feels like no one understands how much your life has been impacted by this illness.

We sent out a survey last year and we have over 1000 respondents… but we still want YOUR input, because we are going to sned it out as a new press release in the next couple of weeks.

Tell us what you say when someone says, “You look so good!”

AND… one of you will be chosen to win a copy of Sherri Connell’s book, “You Look So Good!” [[link]]

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