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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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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Continuing to work with cancer or a chronic illness is very important for many people. It is one of the few parts of life that a person can feel they have control over. Having a sense of normality is essential when treatments, frequent visits to hospital become an unwelcome part of everyday life. Working can provide a welcome relief from daytime TV.
Here are 5 tips for supporting individuals working with cancer or chronic illness:
- Treat them as a normal person; they are still the same person and not defined by their illness. They may look different, but it is the inside of them that matters most. Make them feel part of the team again.
- Meet more regularly. Involve them in agreeing manageable workloads. Break tasks down into smaller steps. This makes any job more manageable and encourages a sense of achievement. It gives a great sense of personal satisfaction to leave work each day having achieved something meaningful. Prioritise together so individual knows the most important tasks to concentrate on.
- Many illnesses are invisible and you will need to weigh up the individual’s right to confidentiality and disclosing to the team. The individual is the best person to guide you. It can help to be open with others close by who can better understand absences and also be more in tune to support the individual.
- Consider a buddy scheme. With the permission of the individual it can be very successful to partner them with someone who has also experienced cancer or a chronic illness – even if they are in a different office. It helps to share how they manage daily activities which might seem manageable to most but impossible for the person who is unwell. It can be a chance for them to share how they manage life outside of work as well.
- Each person is different and keeping the conversation open in vital. As a manager you may have experienced many people with illnesses but no two people are the same. Each one of us copes differently and need to be managed accordingly. All the answers can be found with good communication with the individual.
Carolyn Matheson is a Master Certified Coach, and works with executives and their teams across the world. She is one of the worlds leading executive coaches whose world turned upside down 5 years ago when diagnosed with a chronic illness. Follow her on Twitter @capcoach
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Recently, a good friend of mine got mono. Whenever I’d read his status updates on Twitter or Facebook, I’d find myself slightly surprised at how limitations and symptoms that were new and foreign to him were completely typical for me. Can’t go to work? Can’t do errands? One activity in a day is too much? Trouble concentrating? His health was radically altered to resemble mine for a few weeks. It reminded me just how much I’ve had to adapt my lifestyle to my limitations. Dealing daily with abnormal health has become normal for me.
It’s not easy to understand chronic illness if you haven’t lived it. I’m always happy to find some kind of analogy for my daily struggles with dysautonomia in order to improve understanding and awareness. This dysfunction of my autonomic nervous system affects almost every system of my body. Symptoms range widely in type and severity from day to day or even hour to hour.
I can be doing ok one minute and flat on my back the next – quite literally. Describing these symptoms and feelings to another (healthy) person is just short of impossible, so sometimes I don’t even try. However, it can be helpful to use an analogy every so often, just to keep those around me in tune with what I cope with on a regular basis.
Tonight, I briefly visited the online support forum for my condition. One member made me smile knowingly when she posted that adaptation and adjustment to her limitations had left her forgetting what it felt like to be “normal.” She said that seeing people standing in 90-degree heat at a BBQ left her marveling: “What if they get overheated? How can they stand so long? How can they talk and not be short of breath?”
I share this sense of wonder when I see average people completing normal, everyday tasks with ease. I sometimes question how a person can have enough energy to get through a full day of work without immediately crash landing on the couch. For me, watching the average person function is akin to seeing a superhero leap tall buildings in a single bound. If I think back, I know that at one time I was healthy enough to do it all, but it’s as if I’m remembering a dream, not real life.
Standing is incredibly difficult for me because my blood pressure slowly drops the longer I’m upright. (To a lesser extent, this also happens with sitting upright.) Unless I shift my weight around, walk, or do something else to circulate my blood, my brain gradually runs out of oxygen the longer I remain standing still.
I used to have no analogy for this kind of feeling, other than a fogginess in my mind and a feeling of urgency to move or lie down. I mean, even though my brain is slowly being deprived of oxygen, I still look entirely normal on the outside. What do people think when I start to have trouble following their conversation or finding words? Do I look thoughtless when I ask a question they just answered 5 minutes ago? Do I appear stupid when I have to think hard about simple responses? Does it seem odd that I can walk over to greet someone but shift away uneasily while we converse? All these questions go through my mind.
Standing for me is similar to lifting a heavy weight above your head. At first, you can hold the weight up without much of a problem. Sure, it’s heavy, but it’s possible.
Then your arms begin to shake as your muscles fatigue. Soon, you can feel your body crying out to put this weight down. As you power through every message your body is sending you to STOP, you eventually find that you cannot will yourself to go on any longer. Your arms suddenly reach the breaking point and collapse under the weight that at first was manageable. It’s the same way standing feels to a person with dysautonomia. The initial stance may be manageable, but the longer I stand, the more urgently my body signals me to sit, sit, sit! If I ignore these signals for too long, I can eventually collapse.
Another problem that I deal with regularly is severe fatigue (usually with muscle aches). Saying these words makes it sound like a nice nap or a day in bed will have me back up in no time. However, my invisible illness is not cured by sleep, and in fact, my fatigue is often at its worst during the hours after I wake up! I have had a hard time describing this type of exhaustion to the average person. There is just nothing like it when you are young and healthy with endless energy. The closest description that matches this feeling is when you have the flu. The flu makes every single muscle in your body ache, and moving feels like you are fighting through molasses. People who have had the flu or even mono can understand this feeling.
When this crushing exhaustion is unrelenting for months and years, it is not possible to maintain a normal life. Imagine how having the flu disrupts normal life for a week or two. Now think about what it would be like to have the flu all the time. It’s important to remind others that even though I look normal, I’m actually putting forth 3 times the typical amount of effort to get through a particular activity, and afterward, I “pay” for an event with worsening symptoms for days after it’s over.
I’ve been thinking carefully about these analogies for some time, and I’m writing about them not to get sympathy, but to spread awareness of what it’s physically like to live in a body limited by chronic illness. Each person with chronic illness probably has a particular symptom that disables them more than others, and some are more severely disabled than others, but the result is the same – trying to operate as normally as possible while feeling very far from normal.
Next time you meet someone who seems confused, distracted, or has trouble following your conversation… next time someone tells you they are just too exhausted to make it out… next time you meet someone with a chronic illness, remember that though they may appear normal, it’s quite possible they are fighting through physical suffering greater than you could ever imagine.
National Invisible Chronic Illness Awareness Week is revealing the struggles behind the smile.
Kristen first experienced chronic illness at the age of 17. Due to serious mold and pesticide exposures, her nervous system and immune system became damaged, leaving her chemically sensitive and unable to maintain her summer job or to remain at her first college.
Due to disability accommodations, a healthy amount of determination, and God’s generous favor, she moved back home and went on to earn both a Bachelor of Science and a master’s degree in biomedical engineering. By that time, her symptoms caught up with her, and just before graduation, she was incapacitated with what was diagnosed as POTS/dysautonomia.
This dysfunction of her autonomic nervous system left her struggling to sit up, stand, or walk, and she had to adapt to a new normal. Now 28, she lives within her limitations, working part-time from home, and learning how to depend on God more than ever before. Read more at her blog.
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We just reached 50 people who are using the Twibbon on their Twitter image. In case you’ve not heard of this it’s like a watermark with the II Week graphic that can go over the top of your Twitter image. You can take it off at any time…. Thank you so much folks!
See below for how you can do this to help us spread the word. Less than 1 week till “kick off!”
Get your ribbon today!
(and see our awesome supporters…. somebody is gonna get a prize)
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Join us for 20 tips in 20 days on what NOT to say to someone who is ill – Please RT! #iiwk10
#iiwk10-Things NOT to say to an ill person #1 – You look so good today! – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #2 – You just need to get out of the house more – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #3 – If you stop thinking about it, the pain will go away – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #4 – You should just pray harder – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #5 – You must not want to get better if you won’t try this – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #6 – When I was your age I didn’t have the luxury of being sick – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #7 – You’re sick again?? – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #8 – I wish I could just sit around all day – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #9 – No pain, no gain! – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #10 – I’d be sick too if I saw doctors as much as you do – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #11 – I have this juice that is working wonders… – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #12 – You must still have sin in your life – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #13 – If you got a job you’d have something else to think about – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #14 – Your illness is caused by stress – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #15 – You can’t be in that much pain. Maybe you just want attention – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #16 – What have you done to make God so mad at you? – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #17 – There are easier ways to get attention – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #18 – It’s not good for your kids to always hear you whining – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #19 – When are you going to get rid of that cane? – see more http://ow.ly/eYpo
#iiwk10-Things NOT to say to an ill person #20 – I’m so glad to see you out and about feeling all better – see more http://ow.ly/eYpo
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This article is free to reprint on your blog, web site, newsletter, etc. Please keep everything “as is” including the resource footer at the end. Thanks!
If chronic illness or pain is a part of your life, the odds are that at one point you have been requested by a physician to keep a log about your activities and pain levels, especially what led up to your pain being most intense. He may have suggested that you write down specific activities, your diet and exercise behaviors, and even your patterns of sleep.
If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. It can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?
It is somewhat ironic that while we may find it a burdensome task to record what we are eating, who we are with, how much we slept, and how we are feeling, millions of people are doing this daily on Twitter. They write what they ate for lunch, if they have a migraine, and if they are up at 2 a.m. working. . . and they call it fun!
It’s time for those of us with a chronic illness to get Twitter to work for us! This social networking tool has been used for dieting records, exercise logs, and even encouragement to stop smoking. Why not for chronic pain record-keeping?
Here are 5 steps to put this into place:
 Create an account at Twitter just for your log of chronic pain. If you are already a Twitterer, set up a new one that will remain private. Under the “settings” options, you can choose to have to approve anyone who wants to follow you. Since this is your pain log, you likely will not wish to any followers. Note that if you already have a twitter account this can seem odd, to not want to increase the number of followers.
 You can now write your posts at any time. You are restricted to 140 characters, but this keeps it to be a less cumbersome task. You can always submit more than one post to describe a particular situation. Set up your account so that you are able to send text messages from your cell phone so you can make posts from anywhere, not just at the computer.
 Remember to post at the very least any major events that are not part of your typical day and your body’s response to them. For example a post may include how you woke up feeling, major weather influences, if you took extra medication, or if you are active or solitary during the day. You can post whatever information may be of value to you at some point.
 Before your doctor’s appointment log on to Twitter and print out the pages if your doctor would like a copy of them. Highlight any major activities that could have created ups and downs in your pain level.
 If you already use twitter for personal or business reasons, consider using a service that will post to more than one account at a time so that you are regular tweets that share where you are and what you are doing can also post to your twitter chronic pain log without any additional effort.
The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!
Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a free 5-day virtual conference w/ 20 speakers. Follow II Week on Twitter for cool prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a impact today!
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We’ve found some we think you will like!
May 16-June 19th we are doing 25 illness fact tweets in 25 (business) days. [Get them here] This is a great way to share some misconceptions about illness, pain, depression and more. 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.
At the end of the 25 days we will choose a winner from those who participated all 25 days (hint: if you can’t keep up you may want to consider a service like Hootesuite.com where you can post Twitter in advance.)
You are free to share these anywhere, including Twitter, your blog, Facebook, etc. Just be sure to add RT @invisibleillwk to the beginning of any post.
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We are excited about all “the talk” going on in social networks and hope that if you have friends, family, co-workers, people who you know have illness, etc. you will share our Twitters with them, our videos, links to last year’s seminars, etc. Nearly everything we do has a “tweet this” or “share” button on it, so if you see a page here on the blog that you think others should know about, please don’t hesitate to share it!
Here are some places you will find us! The bigger net we cast, the more people are we are able to reach. We hope you will help us cast a few nets.
Facebook gets it’s own category due to just how much you can do here.
- Join our Facebook “Fan/Like” Page here!
- Sign up for Invisible Illness Awareness “Cause” – click here
- Do you like groups on Facebook? Well, we’ve got one just for Invisible Illness Week! Join the Invisible Illness Awareness Week Group here
- if you want to stay in touch with whatever Rest Ministries is doing (the founder of this week!). – click here
- Note that on almost any page here, video, etc. you’ll see something that says “share.” If you are involved on Facebook, we’d love it if you would share any inf0rmation with your friends. Even put it on your calendar to post something like a link to an article, each week.
- Give II Week Gifts to people. If you are familiar with Facebook this concept may be familiar. - click here for II Week gifts
- Give someone some flair! - click here for our II Week Flair
TWITTER & OTHER CONTENT
Twitter is a great way to stay in touch with whatever your passions are. We have a Twitter account just for Invisible Illness Week at www.twitter.com/invisibleillwk . You can also find out about everything Rest Ministries at our founder’s Twitter: www.twitter.com/lisajcopen .
How can you help through Twitter? Many people are just joining and a bit unsure how to use it. Here are some ideas:
- We have an entire web site for Invisible Illness Week Tweets. You can use anything on this site in your tweets, or follow us and ReTweet what we are tweeting (that means you copy what we are posting and in the front of it put RT @invisibleillwk
- On nearly every page of our web site we have a “twit this” button. Click it and tell your followers!
- Join our Twitter Groups for Invisible Illness Week. You can also find more interesting people to follow this week.
I know I’m not all that interesting but it seems some people want to know what I am up to. If you’re one of them, you can see what my twitters and facebook posts, etc. say at friend feed. Join our Friend Feed Group for Invisible Illness Week
Friendster is a lot like friend feed.
OTHER SOCIAL NETWORKS
Are you on MySpace? If so, click here to add us as a friend. A lot of people with chronic illness hang out over at MySpace and in 2007, three months before Invisible Illness Week about 8000 people came to our web site through our page there. So… it’s worthwhile to have and connect with others.
Squidoo is a fun place to get a bunch of information on one page. If you visit, be sure to add a comment, vote for our page, etc. It all helps in the rankings.
Ning.com is where we host our Rest Ministries Sunroom an in the Sunroom we have an Invisible Illness Week Group. Come hang out with us here and find tons of great friends. If you are involved in other Ning.com groups be sure to post our Invisible Illness Week video, blog about Invisible Illness Week, etc.
PODCASTS AND VIDEO
Blog Talk Radio is where we have all our seminars hosted. It’s like a live radio show online, but the programs are also archived so you can listen any time. If you click on our Invisible Illness Week Blog Talk Radio link you will still see (and be able to listen) to all 19 programs from last year. When you are there be sure to click on anything! Make us a favorite, get show reminders, “share” a specific show with friends. The more people click the higher we rank in their web site and the more people we can reach.
All of our radio programs are available for free at itunes too! Just click on this itunes link and it will take you right to them. The biggest perk? You can download them your ipod and listen to them while out walking or maybe when you are stuck in bed.
We have Invisible Illness Week videos available. These are great to share and the one for 2009 can even be purchased on DVD if you want to show it in high resolution for an event, church service, etc.
We’ve partnered with Bloggers Unite, an organization that helps causes like ours know who is blogging for them on their topic or cause. If you will help us out by posting at least one blog about Invisible Illness, it’d be great if you would sign up here so we know who you are and can make sure to let others know too! Be sure to get the badge that says, “I’m blogging for Invisible Illness Week” here!
We’re listed in Blog Catalog so more people can find us! If you are a blogger and listed here too, let’s connect!
CAUSE-RELATED SOCIAL NETWORKING SITES
At my-cause you can click a button that says you are a supporter and also copy and paste some code to get this badge below to put anywhere on your web site, blog, etc.
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- Join us in the Sunroom to get to know other participants of National Invisible Chronic Illness Awareness Week
- If you’d rather not be in a specific Christian group, we recommend joining the II Week group at Illness Twitters (but you should have a twitter name to make the most of this group)
- We also have a Facebook Group and a Facebook Cause for Invisible Illness.
- Follow us on Twitter
- Follow our founder’s blog tour through over 60 blogs on illness topics.
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