Thursday, September 25, 2014


Merriam-Webster's online dictionary defines perseverance as continued effort to do or achieve something despite difficulties, failure, or opposition :  the action or condition or an instance of persevering :  steadfastness. Those of us who have lived with an undiagnosed illness know all too well the meaning of perseverance. We've had to fight to be believed by our friends, doctors and, sadly, at times, our family. We've kept going to doctor after doctor, even after realizing that this may give us the label of "doctor shopper." We keep on going because we want to find "the one." The one who will believe us. The one who will order the needed tests. The one who won't be afraid to admit he or she doesn't know what is wrong. But, yes, they will be willing to make a referral to someone who might be able to help.

 I lived this life for nearly a decade. It's a horrible, horrible way to live. There's something to be said about the strong ones who don't give up. Sadly, funds and/or referrals may run out. When this happens, it's a matter of finding resources to help keep up the fight. There are advocacy groups for our suspected illness who may be able to lend a hand. There are government programs for those who are undiagnosed. There are patient advocates at insurance companies. Online message boards and Facebook groups are a great resource for those caught up in the medical maze. It's sad that when we are at our lowest is when we have to fight our hardest. In my case, I was getting sicker and sicker over time. I had a husband and children who needed me. Giving up wasn't an option. Giving up isn't in my nature either. I'm lucky enough to be going through this a second time. I'm being sarcastic, of course. I can't say I'm thankful for all that I went through to get the EDS diagnosis, but it did teach me a few things. I know how to advocate for myself. I know how to research doctors, tests, medications, and treatments. I know to believe in myself and to never give up. If you are searching for a diagnosis, don't give up either. Keep on fighting. 

Here's a good article I read about those who are living with an undiagnosed illness. I hope you find it helpful.

"Never,  never, never give up" -Winston Churchill 

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