“You Don’t Look Sick” Can Sting

Each day I receive a list of people who have blogged about their invisible illnesses and I’m still surprised at the number of people who hear the words “You don’t look sick” and write about how it feels to hear this well-meaning, but still stinging words.

Here are some people who, like you, “don’t look sick.”

You ask me if I’m sick?! Where do you get that from? I’m not sick. I have never been sick. And I will never be sick. Not in the way you ment it. All that happened, is that I have got an issue with my balance, a balance disorder. Or no, not really. I have got no issues whatsoever with whatsoever. Actually balance has got an issue with me.  JudyDonnelly.com

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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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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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