InvisABLE Illness

When the Doctors diagnosis comes in and you find out their conclusions, you are basically sent home with no information shocked, confused, worried and in some cases scared. I worked for months to get myself some information on them. Then I realized that if it was that confusing and difficult to find information for me it would also benefit others to be able to get the information. Thus my site was born InvisABLE Illness. It is a constant work in progress as I'm constantly adding new information. I've had many emails sent to me from people who have found the site to be very helpful not just for them but for their friends and family so they can get an idea of what a person goes through daily with an invisible illness. It's certainly not fun especially the pains and extreme total exhaustion in CFS and CPS which are many times associated with Fibromyalgia. InvisABLE Illness

If I can help just one person, or tell the family of one person, and have them understand then my work will have paid off wonderfully. Before all this I was in the Corporate World, always in a position of Executive Management. Now, I can't even count change. But I look at this as having my destiny changed. I now feel that I am to help educate people about this, put the information out for the masses. And help. Give comfort. Bring Peace and Understanding.

I have to admit, I have spoken to the Mother of a very dear and sweet young lady who is a real inspiration. The Doctor gave them her diagnosis, and since she was a minor, spoken over her to her parents. Did he tell them anything about what to expect? No. Did he explain what the Chronic Pain and Fatigue she's been having is from? No. He didn't even tell them about that. Didn't talk about why she can sleep 8-10 hours and be so totally exhausted she can't even get out of bed. He didn't tell them that she experiences pain in levels that can't even be listed on their typical 1--10 scale system. That the pain she experiences is worse most times than even the most painful of birthing pains. Just basically said 'Well, your daughter has Fibro, come back and see me in 6 months and we'll listen to her heart again and send you home'. No information, no meds to help her, nothing.

So of course when she was so exhausted that she had to leave her Gifted High School and transfer back to a regular one since she couldn't keep up in attendance, they thought she was suddenly a poor student, getting lazy, which of course leads people to believe that the student simply "must" be falling in among the wrong crowd.

That is so far from the truth. She's an Honors Student. This is one of those cases where you question God and all things Holy and ask Why? Why did you inflict this brilliant young lady with this? She has so much going for her, she knows the path for her future, but now what Lord? She was destined to be the next Einstein. In the next 20 years or sooner this 'child' will have done more for the world than most top scientists can only dream of. THIS is the person who would be winning the next Nobel Peace Prize!!

So please, for your child's sake, and your own, seek out more information. Be informed. Don't let lack of medical information drive a wedge between you and your child....no matter what their age!

Something that everyone with an Invisable Illness needs to remember is your Spouse, your Children, your S.O.,even your parents they are hurting too. They may not have the pains you do, and they may not understand fully the extent of your pains. But don't forget them. Talk with them about it as much as they will allow. A very good and important thing is: ASK THEM HOW THEY FEEL!! Ask them how your conditions(S) now affect them. Figure out ways to work with these things to try and make your relationship stronger. Don't let your Illness come between you. If they love you, they will understand and WANT to be there for you.

It's so easy to say, "Not today Honey", or "How about Later"....and later never comes. When your child is the one affected, and you have no information on what this condition does, what goes with it, etc. You might be unknowingly putting a huge wedge between you and your child. If you don't realize the pain involved and the extreme fatigue, and your child has Fibromyalgia for example, you might be calling them lazy, complainer, whiner...but they aren't, they physically "Can't"!!

So please, whether you have an invisible illness, or know someone who does, please take the time to visit the site. InvisABLE Illness