Are You Blogging for the Cause? Post Your Blog Here!

Hundreds of people are blogging for the cause of Invisible Illness Week! Thank you!

We look forward to visiting you blog post. Please write a sentence or two about your post and provide your link. We look forward to reading it and possibly sharing it with others too.

And if you haven’t yet, we’d love to have you register “officially” over at Bloggers Unite!

Here is a sampling of some of the blogs by illness bloggers who have signed up with Bloggers Unite and the blogs they have written. Be sure to check them out!

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PRESS RELEASE – feel free to reprint
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Chronically Ill Unite September 14
to Blog About Invisible Illness Issues

9/9/09 – SBWIRE – SAN DIEGO — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.

With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”

Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.

Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible

Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.

Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.

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Submit a Guest Blog

We’ve heard lots of you say “I am going to submit a guest blog post” but there are not a lot of submissions coming in and we’re afraid they are all going to come at once. We’d love to hear from you.

Submit your guest blog post today.

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Do You Read Illness Blog Web Sites?

Are you a reader of chronic illness blogs? There’s some terrific ones out there! Be sure to let the bloggers know about National Invisible Chronic Illness Awareness Week.

Some of you have asked “what exactly should I write?” Below is an example to help you formulate your own message. Be sure to personalize and not spam people.  Thanks for your help!

I really enjoyed your recent post on [the topic]. Since you blog about invisible illness, I thought you may be interested to know about National Invisible Chronic Illness Awareness Week, which is September 14-20, 2009. The theme this year is “A Little Help Gives a Lot of Hope.”

There is lots of information available at the web site www.invisibleillness.com, including facts/statistics, articles, and some great goodies like tote bags or white silicone bracelets that say, “Invisible Illness – Visible Hope.” You can find daily updates, guest bloggers, a blog tour, lots of cool things to tweet and even a badge that says, “I’m blogging for Invisible Illness Week”.

Thanks again for taking the time to bring awareness about living with chronic illness through your web site.

[your name]

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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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Do You Think of Yourself as Sick?

Often with an invisible illness, when you are managing to get around and do things, people don’t see you as sick. This can be incredibly frustrating, but it also gives you the chance to decide whether or not you say that you are sick.

You may want to avoid this or say you are not sick for specific occasions, such as meeting someone new or at a job interview, or you may decide to not define yourself as sick.

Perhaps you prefer – as someone I know does – to consider yourself disabled, or perhaps you prefer to consider yourself as someone who isn’t sick, but just has health issues.I started getting severe headaches aged about 8 or 9 and by the time I when to secondary (high) school these had developed into migraines. I remember being taken into the big kids’ classroom at junior school so I could lie down in their reading area while waiting for my Mum to pick me up.

During secondary school, I spent quite a lot of time in the nurse’s room or being taken home from school with yet another migraine. My friends joked about me always carrying medications and I ended up first on preventative meds and then having to see a holistic doctor to help get control of the migraines (chocolate, caffeine and lots of other foods contributed as triggers).

But I never thought of myself as sick. I was just a kid that happened to get migraines. Maybe I didn’t think so much about it because they run in my family,

When I was about 13 or 14 I started getting excruciating pain in my knees sometimes as they gave way when running up stairs or turning corners. I didn’t think much of it, learnt to twist and shake the leg until my knee felt right and then continue on my way. My parents both had issues with joints not doing as they should so I thought little of it. But I now recognize the signs of subluxations, a part of Hypermobility Syndrome. I did not think of myself as sick – or disabled – in any way. It was just something annoying that I dealt with.

Around that same age I started getting lower back pain and was diagnosed with having too much of an arch in my lower back – something I now know is called hyperlordosis. My Dad has the same problem and I thought little of it. It was just another annoyance that I had to deal with. Physiotherapy exercises helped but I found them boring.

It was only after I developed severe IBS and Fibromyalgia Syndrome (Fibro) when I was 21 that I started to think of myself as being sick. The IBS, which was the worst symptom for some time, probably had something to do with this, as catching an infection is definitely being sick in my book and that’s how my IBS started.

The rapid development of my Fibro symptoms also made me think I was sick. It took me a few years to get a Fibro diagnosis and during those years there were plenty of times when I thought or hoped that I had something simple that could be treated – that I was sick but could be made better.

After I worked out what I had – a chronic illness – I slowly came round to the idea of being disabled as well as sick. But then I finally found a good doctor and got control of my Fibro. It’s only occasionally a real problem now, mostly just being there at such a level that I’m not sure what’s Fibro and what’s being normal-tired and normal-unfit.

I don’t think I’m sick now really. I still have a chronic condition but it is managed. I’m not really disabled by it. Am I back to being just someone with health issues? Possibly.

National Invisible Chronic Illness Awareness Week is a fantastic way of raising awareness that many people may look well but have a chronic illness.

After developing Fibromyalgia Syndrome (Fibro) whilst in her final year of University, Lindsey Middlemiss got involved in the online community and became a patient and awareness advocate through blogging and moderating on forums. Applying research skills learnt at Uni to Fibro, she delved into what is known about Fibro and is now a Fibro patient expert.Lindsey has set up a new charity in the

UK for Fibro Awareness – FibroAction www.fibroaction.org – which aims to make up-to-date and accurate information about the condition readily available to everyone, as well as improve public awareness of the condition.

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My Husband Lives With An Invisible Chronic Illness Too – “But he looks so good!”

My husband silently suffers from Degeneration of the intervertebral disc, which is often called “degenerative disc disease” (DDD) of the spine a condition. It can be painful and can greatly affect the quality of one’s life.

Disc degeneration is a normal part of aging and for most people it is not a problem; but for certain individuals, a degenerated disc can cause severe constant chronic pain.

My husband will rarely let you know that he is in pain, but I can see it in his eyes, the way he walks, and the restless nights due to pain.

The other week at our apartment complex, there was a woman trying to help her husband move a couch down three flights of stairs. Out of sheer frustration, she came running over to my husband to ask him for help. My husband politely explained to her that he was unable to assist them. From the outward appearance one would never think that this tall strapping man had anything wrong with him.

She snapped back at my husband as though he was too lazy to assist them or that he was being rude. My husband felt terrible about the situation, and even considered helping them even though it would cause him great pain.

When my husband told me about the situation, he said, “Now I know what you have been experiencing for twenty years with your invisible chronic illnesses.” He has seen how people would react to me, even when he knew how bad I was feeling, yet people would say, “You look so good, you must be feeling better!” Now, he was having first hand experiences with people regarding his health.

This man who has been so physically active throughout his life; playing football, physical jobs, serving his country as a marine during Vietnam era , is now having to adjust to life as one with an invisible chronic illness with all the ‘labels’, rude or inconsiderate comments that go along with the illness.

Although, I don’t think that the comments bother him as much as realizing that he is not as young and spry as he was twenty years ago. None of us are; and unfortunately aging is NOT an invisible illness!

To bring awareness to those who suffer from invisible chronic illness, my family will be joining thousands of other families across the USA, as we celebrate National Invisible Chronic Illness Week, September 8 -14, 2008. We plan on giving each family in our church, Desert Sun Baptist Church, in Glendale, Arizona, the book, Beyond Casseroles: 505 Ways To Encourage A Chronically Ill Friend, by Lisa Copen, founder and director of Rest Ministries and Invisible Illness Week. We encourage others to spread the word about this special week. On their website they have various ways that you can get involved. Please visit their website at: www.invisibleillness.com .

National Invisible Chronic Illness Awareness Week is necessary to help educate the public about the effects Invisible Chronic Illness has on those who have the illnesses as well as those who care for them.

Michele Williams is a wife, mother, grandmother, counselor, teacher, public speaker, business woman, and writer, who is trusting in God that He will strengthen her to rise above life’s difficulties. Since 1985 Michele has lived with multiple chronic illnesses: Fibromyalgia, Peripheral Neuropathy, Osteoarthritis, Interstitial cystitis, IBS, chemical sensitivities, to name a few. She lives in Phoenix, Arizona with her husband of 34 years, Dr. James E. Williams, Senior Pastor of Desert Sun Baptist Church in Glendale, Arizona. Michele will be a guest seminar speaker for the National Invisible Chronic Illness Week, September 8 – 14, 2008. Her topic is Illness and Faith: Does Faith Make A Difference?

Visit her encouraging and sometimes humorous blog, Michele’s Morsels – Beelieve at: http://michele-risingabove.blogspot.com . Her online business, MJ Quality Gifts & More: http://www.mjqualitygiftsnmore.com and http://jandm.healthyhometour.com

Michele will be a speaker for one of our II Week seminars. Be sure to check out our schedule for the time and date.

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From “It’s all in your head” to the “Accidental Significant Find”

I have an invisible illness. For years I was told that it was “all in my head” and quite honestly, I was beginning to believe them! Family members, friends and medical professionals would hear my symptoms and tell me I was just stressed, or maybe I was making things up for attention, the tests even said that “nothing” was wrong. Of course, that was because they were testing for the wrong thing.

While my husband is an absolutely wonderful man, he does not get sick, or at least not in the way I do. His cure for a headache would be to go outside and be in the sun or work out. That works for him. It doesn’t for me.

At various points over the last eight years I have thought I was going nuts. I had been diagnosed with a slew of varying things, yet the medication I was given never really took care of everything I was feeling. I had been told maybe I have breast cancer or heart disease – let me tell you it was a thrill to take and pay for the tests… Yuck. “Just put her on Prozac!” Not!

I tried medication the doctors told me I should have – some that the side effects were worse than you could imagine. I tried Chiropractic, Mechanical Link, exercises, self-hypnosis, you name it. Then, when it would not work, the professionals would say “It’s all in your head!” If I heard one more person tell me that my aches and pains were “just stress” I think I would SCREAM!

Dizzy, leg cramps, migraines, joint pain, mood swings, heart palpitations, sleep apnea, fatigue, occasional loss of vision, chronic back pain, distraction, easy bruising, nausea, short term memory loss, and symptoms that are too personal to mention on a public blog are all a part of my life. But really, does anyone want to hear that stuff when they ask you how you are? To make it worse, weight gain of over 65 pounds. “Come on Stephanie – don’t you think you could just cut out the sweets?” I guess I figured that when I gained 10 pounds over night, it probably was not the sweets I ate!

This past December I was taken to the ER because they thought I was having a stroke. I was dizzy, had a migraine and could not see at all out of my right eye. We were there all night, my husband, my 6-year-old and me. Cat Scans and then a couple MRIs of my head (and a few tests I don’t even remember what they were) later, the ER doc came in and nonchalantly told me that I was not having a stroke, but they did have an “accidental significant find.”

An “accidental significant find?” What the heck is that? “Oh, you have a tumor,” and then out the door he went. Like it was no big deal! The nurse came back in and gave me some pain medicine and sent me on my way telling me that I would need to see a neurosurgeon later.

What I later learned is that I have a pituitary tumor. 1 in 5 people in the world have this kind of tumor and many live with a similar story to mine. In fact, 25% of tumors are found during an autopsy!

You see, the pituitary is a really tiny gland – the size of a pea – that is at the base of your brain. This teeny-tiny gland is the controller of the body. Just like the thermostat in your home will sometimes tell the air conditioner to kick on and sometimes will tell the furnace turn on. The pituitary controls the other parts of the body that create hormones. A tumor in this location can cause a rather wide range of weird reactions.

I’m sometimes scared about what comes next, but at least I know that it IS in my head quite literally and I am NOT crazy. Knowing that gives me the power to figure out next steps. I know what I am battling now.

When people look at me, they don’t know any of what I have just shared. In fact, this is the first time I have ever shared in this way, but I think it is important for others to know.

I work with so many clients that struggle with invisible chronic illness. Attention Deficit, Migraines, Depression, Fibromyalgia, and more. These clients are not lazy. They are living life with challenges that most can’t or don’t see. Many times, they are brilliant people that have to make compensations in order to function in daily life.

National Invisible Chronic Illness Awareness Week is important because there are so many people that struggle every day and with even a little support and understanding they could have a renewal of their spirit.

Stephanie LH Calahan is a dynamic entrepreneur, nationally known speaker, media personality, author, publisher; productivity/organization consultant, and business start-up coach. As the founder and CEO of Calahan Solutions, Inc., she and her consultants focus on conducting presentations, personal coaching, assessments and organizing services for people that want help with time, space and information.

Stephanie, as a productivity and organization consultant, is giving donating about 15 free 30 minute telephone consultation about issues you are experiencing around time, space and information. Check our prizes page for details.

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6 Ways to Make a Difference for Invisible Illness Week

Here are some fast ways that you can make a difference today!

 

1. Change your signature file for the next month in your email program 
   
2. Post well-written press releases [here is an example] about your story on some of the free press release web sites and send them to your local paper too! Some freebie sites include: Express Press Release; PR Log; EWorld Wire; PR Insider; or for $10 Press Release 1-888 is a good one
   
3. Contact the communities you’re involved in online about invisible illness week
   
4. Pass out brochures at your local doctors office waiting room, therapy office, support group, pool, church, everywhere!
   
5. Put up your “I’m blogging for invisible this week” badge on your web site
   
6. Set up a resource table with your brochures, bracelets, etc. at your local support group meeting, church ministry fair etc.

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MEDIA RELEASE: Blogging for Awareness of Invisible Illness Week Unites Thousands

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 .

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GUEST BLOGGER: Can You be Friends If They Think You Are Faking Your Illness?

by Lisa Copen
[This article can be reprinted "as is" for your own web site, blog or personal use]

Are you interested in being a guest blogger? We are having guest bloggers through Sept 14th, 2008! Send us your submission to be a guest blogger for National Invisible Chronic Illness Awareness Week.

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Can You be Friends If They Think
You Are Faking Your Illness?

If you live with an invisible illness, you may find the emotions of coping with people’s doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.

So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:

1. Go with it. Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.

2. Grow with it. Use this as an opportunity to reflect on how you perceive other people and what you assume about their abilities. For example, when you’re standing in line at the store and feeling wiped out, it is easy to assume “No one else knows how hard this is for me!” Surprisingly, nearly 1 in two people live with an illness and about 96% of the painful diseases are invisible. So the odds are that there are people who do actually understand how you feel. Also, think about what situations your friends are experiencing that you don’t really understand. Is a friend suffering from a spouse who has had an affair? Do they have a parent who has Alzheimer’s? Or have they recently lost a job? All of these events dramatically change one’s life and your friends can use your empathy and understanding.

3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.

4. Get on with it. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.

The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don’t say “I told you so.”

Go with it. Grow with it. Get over it. Get on with it.

Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.

I believe National Invisible Chronic Illness Awarness Week is important because… it gives us a chance to bring people who live with thousands of different illness together and discover we have more in common than not. We can encourage one another while also creating a deeper understanding among the “healthy” population that most illness is invisible and that many of their preconceptions about people with chronically ill aren’t always correct.

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Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week, Rest Ministries and the author of various books on chronic illness. Get a free list of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen, just sign up for HopeNotes invisible illness ezine at Rest Ministries.

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