If you live with an invisible illness, you may feel alone in your experience, but e-patient bloggers are using it as an opportunity to speak about the pain you never see.
Feel free to share this press release in any way, or a quote from it–on your blog, Facebook, Twitter, Pin it, whatever! We appreciate your help and the e-patients who are involved.
San Diego, CA — (SBWIRE) — 08/28/2012 — When it comes to bloggers with passion, “e-patient bloggers” who share about their illness journeys, have changed how people find encouragement for living with their illness. A recent study found that 41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog, and 38% say it changed the way they cope with a chronic condition or manage pain.*
National Invisible Chronic Illness Awareness Week (NICIAW), established in 2002, is September 10-16, 2012 and e-patient bloggers are the inspirational force behind the campaign’s success.
“These e-patient bloggers are strong advocates for increasing awareness for causes such as invisible illness,” shares Lisa Copen, founder and coordinator for NICIAW. “They open up their hearts and become vulnerable in order to educate others and increase understanding among the healthy community.”
InvisibleIllnessWeek.com features guest bloggers through September 16th that focus on a variety of topics that impact the lives of those who are chronically ill. These include being the spouse of one with illness, learning how to ask for help, and being a part of the patient community.
Anyone is welcome to participate in blogging about their illness, the emotions involved, their medical journey, or what they have learned. At InvisibleIllnessWeek.com a blogger can instantly link his or her blog to the campaign’s website. Bloggers can also download the badge that shares their intent to blog about Invisible Illness Week or personal issues of living with an illness.
Copen shares, “The personal factor of reading about a similar health or illness experience of another person online, can sometimes be more influential than classes or doctor’s instructions when it comes to learning to cope with pain.”
Research has shown that among the those whose most recent online search affected their health, 56% say it changed their overall approach to maintaining their health or the health of someone they help take care of.*
Many e-patient bloggers are participating in the Invisible Illness Week Meme, “30 Things About My Invisible Illness You May Not Know.” This year’s theme, “Invisible Illness? Share Your Visible Hope!” encourages people to post photos via the website that show things that give them hope, whether it is a sunset, a pet, or a grandchild.
During Invisible Illness Week people can participate in the virtual conference by watching seminars with a variety of speakers on topics such as how your personality may influence your style of coping, how to work from home when ill, and to how to explain your illness to others. For more information see http://InvisibleIllnessWeek.com .
*The Social Life of Health Information, by Susannah Fox, Sydney Jones, 2009
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I am so excited about how the virtual conference planning is taking shape. In case you haven’t heard, it will be a video conference and once we have the schedule complete you can see what time each person will have the video released. Then, there will be room below each individual conference video for comments and our speaker will be checking in to answer questions and more.
We would (obviously!) love to spread the word so people know about this conference that is coming up. We have press releases going out, all kinds of contacts, etc. but really–it is people like you who share about it with your friends–that make all the difference.
And that is why we have this handy-dandy -graphic image to share on Facebook or whatever other social network you may participate in. You know the drill. . . and I truly appreciate it!
See our virtual conference page for all the details!
PS: You don’t need to register, but if you are coming, and you are on Facebook, be sure to RSVP!
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What’s a cause blog and do I need one?
Do you have a blog? Whether it is officially a “cause blog” or a “blog with a cause,” –or a blog about anything — you can certainly use it to increase awareness about invisible illnesses. You may have a blog and not even realize it! For example, many health social networks include a blogging feature, such as the Rest Ministries Sunroom.
We hope you will take a few minutes this summer and write a cause blog or two about Invisible Illness Week or what it is like to have an invisible illness.
Hundreds of people are joining our efforts to cause blog about either Invisible Illness Week or their invisible illness! If you don’t have a blog, just try to post something about it somewhere and it will help us out a lot. (Pinterest, LinkedIn, Facebook–any social network you are a part of.)
Whenever you publish a cause blog post something it helps us increase our exposure and it’s because of you this week is going to be a success.
You can find the different categories of blogs for Invisible Illness Awareness Week here. They all fit somewhere, so if in doubt, put it under “My Story.”
If you have posted your thoughts somewhere in a cause blog, be sure to let us know! Come back here and hit the blog submission button above to link it up so people can find it.
We’d love to come and visit your blog!
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Do you know a health editor?
Between all of us with a variety of chronic illnesses and symptoms, there are hundreds of thousands of newsletters and ezines out there on the internet. Since many of us live with different illnesses than our friends, we actually all have a relationship of some kind with at least one health editor (maybe even more!).
I am letting the health editors of the newsletters I receive know about Invisible Illness Awareness Week. Now, I am not suggesting you start spamming people and email off 200 emails to health editors, but rather, if there is a health editor I have built some kind of friendship with online, via the newsletter itself or on a social network, I am hitting “reply” or “contact” and sent them an email sort of like this below. Be sure to personalize yours and keep it short when writing to your favorite health editor.
Keep in mind that the easier you can make it for them to tell others the more likely they will! So be sure to include the paragraph that has the description they can copy and paste.
Dear (name, Health Editor):
I recently received your newsletter and enjoyed it as always, especially the part about (what I liked here).
I wanted to call your attention to the date of September 10-16,2012, which is National Invisible Chronic Illness Awareness Week.
September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers each day. The theme this year is “invisible Illness? Share your visible hope!” and we are uploading photos of things that give us hope in our daily life–despite the pain and side effects.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips.
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. You can find more information at http://InvisibleIllnessWeek.com
Thank you so much for passing this along!
Thanks for your help, friends!
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Share your hope! Even though you live with an invisible illness you can find visible hope each day. So join us and share your hope!
Are you ready to kick things off? We are! The theme for this year’s Invisible Illness Awareness Week is “Invisible Illness? Share Your Visible Hope!” And Lisa’s video below tells you exactly how to start doing that today! We invite you to share your hope with the rest of us.
One of the ways to share your hope this season is by uploading images/photos (of your own) that show that (despite living with an invisible illness) we can and do have visible hope. Living with illness doesn’t have to mean all doom and gloom. In fact, thousands of people challenge each other every day to “share your hope!” online. They inspire others through their writings, videos, podcasts, quotations, and photos. Even if you have never uploaded an image before we hope you will be inspired to join us!
And remember to add #iivhope to the description of any video so we can find them all over the internet with this tag. We want to share your hope too!
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The most popular topics about invisible illness seems to be the misconceptions people have about a chronic disease or pain that cannot be seen.
Are there really that many people with invisible illness?
Why another awareness week? Enough already!
You can’t be that sick.
If you were that sick, you wouldn’t be able to stand here and talk to me.
But you look fine to me.
If you just thought about something other than your illness, you’d start to feel much better.
Do any of these sound familiar?
Help increase awareness about nearly any illness (most of them are invisible), by tweeting these facts below and reminding people that situations are not always as they appear.
We’ve found some interesting facts we think you will like and highlighted some few special statistics about invisible illness or chronic pain. You can find sources for our statistics here.
You can follow us on Twitter and then add “RT” at the beginning (that means you are retweeting it) and @invisibleillwk. That way people know the source where you found it and they can sign up for it themselves.
Facts to Tweet About Invisible Illness
RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #3 The significance of one’s faith has shown to help one handle a stressful medical event better http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #4 Sadly, the divorce rate among the chronically ill is over 75 percent http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64 http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #9 Sadly, physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #10 About 1 in 4 adults suffer from a diagnosable mental disorder in a given year. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #12 More plp need pain treatment than those w/ cancer, heart disease, stroke & diabetes combined. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #13 Less than 2 hours is spent on pain management in most medical school curriculum http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #14 Most people prefer illness mgmt advice from health professionals before their spouse http://ow.ly/72fO
RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #16 4 in 5 health care dollars, 78% are spent on people with chronic conditions in USA http://ow.ly/72g4
RT @invisibleillwk #iiwk12 Fact #17 Patients with a deep faith recover faster from depression,even when illness doesn’t improve. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #18 Faith reduces stress, loneliness, pain, & anxiety according to American Cancer Society http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #20 34% of respondents said the person closest to them with a chronic illness is a parent. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #21 Most medical residents leave med school believing that 80% patients R addicts seeking drugs. http://ow.ly/72gP
RT @invisibleillwk #iiwk12 Fact #22 Over 75 percent of patients with depression complain of physical pains. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #23 The # of plp in the US 65 > will double in the 25 yrs to 20% of Americans = more illness. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #24 Depression can predispose patients to chronic pain due to chemical imbalance it creates. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #25 Faith gives plp w/ health challenges peace of mind & will to live http://ow.ly/6Otw
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Last year hundreds of people participated in our “30 Things Meme.” We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).
This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?
Copy the 30 things meme below, fill it out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.
And don’t forget to let us know about it! Fill out the form below (scroll down past the meme) with name of your blog and where the meme is posted so we can come read it!
Thank you for participating and spreading the word.
30 Things About My Invisible Illness You May Not Know – 30 Things Meme
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
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* Feel free to share this on your blog, post it in your newsletter, whatever! Thanks for your help.
Invisible Illness Week Team Offers Free Ebook of 263 Tips
San Diego, CA — (SBWIRE) — 09/01/2010 — National Invisible Chronic Illness Awareness Week is September 13-19, 2010. A free 80-page ebook is now available for download to anyone who signs up for daily updates from the web site invisibleillnessweek.com .
“Chronic Illness Tips: 263 Ways To Do More Than Just Get By” is by Invisible Illness Week founder, Lisa Copen and friends. Friends include chronic illness career specialist Rosalind Joffe, relationship expert and best-selling author Pam Farrel, advocacy authority Jennifer Jaff, and illness advocate Jenni Prokopy.
Over 20 contributors share their best tips to live successfully with chronic illness on a variety of topic. “These experts are people who have the credentials,” says author Lisa Copen, “but more importantly, they have experienced illness themselves or health issues of someone close to them. Their tips come from the experience of living with the challenges illness gives us.” The chapters include coping tools, relationship issues, career, faith, and practical tips, from traveling with an illness to homeschooling. There are also many tips on how to encourage someone who lives with a chronic illness.
National Invisible Chronic Illness Awareness Week is an annual event that features a free virtual conference online 9/13-17 with speakers each morning 10:30 – 12 USA Pacific time. There are a variety of ways a person can get involved including blogging for the cause, completing the Meme “30 Things You May Not Know About My Invisible Illness”, or joining the campaign on Facebook.
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.
For more information see http://InvisibleIllnessWeek.com .
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Are you on Twitter? We have over 2000 followers of us on http://www.twitter.com/invisibleillwk.
[And if you do Twitter about your illness you may want to join a group Lisa started Illness Twitters .]
There are lots of things to tweet about Invisible Illness Week! We have tweets for. . .
- 20 Things to Say to a Chronically Ill Friend
- 20 Things NOT to Say to a Chronically Ill Friend
- 25 Illness Facts in 25 Days
- If Your Friend is Ill Tips (27 of them)
- Friendship Tweets
A quick way to find any tweets about Invisible Illness Week is to search twitter for #iiwk10 which is our hashtag. If you do any tweets on II Week, be sure to put #iiwk10 somewhere in the tweet so people can find it later when they search.
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Have you ever watched a woman (or man) park in a handicapped parking spot and then you see her get out and walk into a building? Perhaps people around you may also be watching. . . and doubting that she has any kind of health issue.
But you know! Perhaps you noticed the slightest limp or her pause to catch her breath or her balance. Part of you wants to go up and say something–but what? And you don’t want to offend her either.
Have you ever considered leaving an ENCOURAGING note?many of us who have (legally!) parked in a blue spot have received rude notes left on our windshield, so why not leave an inspiring note?
What do YOU think? If someone left you a note that said something like we’ve listed below would you be encouraged or feel like someone was getting too personal?
Here are some ideas of what you could write. Feel free to add your own in the comments section below.
- Invisible illness can be one of life’s greatest challenges. You are doing it with style!
- You never know who’s life you are touching. Your strength despite your pain encouraged me today.
- I live with invisible illness too and I wanted you to know someone is praying for you today.
- I’ve lived with __________ for _____ years. Seeing you today encouraged me to keep on going. Thank you!
- You never know how you can encourage someone just by doing daily errands. I have _________. Seeing you parking here and living life, was inspiring to me. Thank you.
- I know personally how hard it is to live with daily pain. Thanks for reminding me to hang in there just by going on with your day despite your pain.
Read about our founder Lisa’s parking spot experience in the article, “Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?”
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