People With Invisible Illnesses – Look Out! We Are Everywhere

By Kerri Sweeris

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again… could be an injury.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don’t feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don’t. Know.

Pride I suppose? Just because I feel like crap doesn’t mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, “I’m not drunk I have Myasthenia Gravis, that’s why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly.”

Another that says, “If I’m riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly.”

Probably should have one that says, “I can’t breathe because my muscles are severely impaired by neuromuscular weakness, I’m not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs.”

And, “Please don’t make “Arrrr, matey” sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I’m exhausted. Unless I take the lead, I’m probably not in the mood for jokes.”

I would have a sign that says, “Don’t judge me for parking in handicapped just because I look okay now. When I’m done walking through this store, I may have to stop three times on the way to the parking lot.”

And of course a sign that says, “Please don’t say, ‘But you look so good!‘ For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?”

We are out there. We are someone you know.

Ever wonder why the middle age man on the subway is always so grumpy? Maybe he’s in chronic pain.

Ever think that the young woman who “can’t control her child” on the train has an invisible illness that makes her so weak and tired it’s truly a miracle she and her child are even ON the train?

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don’t want to be invisible anymore.

Kerri Sweeris is a 39-year-old mom to her miracle child, Jacob, who just turned four. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness

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Change Your Twitter Profile Image ‘Till II Wk

One of our visitors recently said, “Please create a Twibbon so I can help spread the word about II Week.” Well, I headed on over to their web site and we now have a “Twibbon.”

Basically you just click here for the Twibbon site and put in your twitter name and password and it will update your image with our orange balloon logo that says, “Invisible Illness Week.”

If you Twitter, it’s a great way to show your support (and may just bring you loads of new followers too!)

Thanks in advance!

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Social Networks Help Lots!

Perhaps one of the biggest changes in the last couple of years is the ability to spread the word about causes you care about to people who are your friends or family members.

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.

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FACEBOOK

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

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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.
  • Invisible Illness Week Tribe

FRIEND FEEDER

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.

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CONTENT

You can copy and paste code into your site, blog, etc (called a widget) and then you will receive our feeds.  We have widgets for Invisible Illness Week, II Week Tweets.

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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.

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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.

Tangle is another video place, but it’s a Christian site! We have some of our videos featured.  We are currently setting up our account here.

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BLOGGING

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!

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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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