Here's the answer that works for me.

 

I've had Crohn's disease for 33 years and gastroparesis for about 2 years (diagnosed only a few months ago).   I could go on disability, spending my time reading and writing.  I probably would feel a lot better physically than I do in this job, which takes every ounce of energy I have.  There are days when I wonder why I fight so hard.

 

But then I give a talk at a children's hospital where I've spoken before.  At the end of my talk, a family approaches me and the mom says "we heard you speak here two years ago, and you changed our lives."  Sick as a dog, and I changed their lives. 

 

While I never would wish to be this sick, I have found a way to use it to make me really good at work that really matters.  Were I not sick, I wouldn't "get it" when the phone rings and a patient starts to try to explain Crohn's disease and I can just say "I know.  I have it" -- and they burst into tears.  I have been a trial lawyer, a law professor, an Assistant Attorney General, and this is by far the most important and rewarding work I have ever done.  And I would not be doing it -- and would not be as good at doing it -- if I weren't sick.

 

So what goodness has being sick brought into your life?  Has it made your family closer?  Has it made you better understand the plight of the uninsured or the disabled?  Has it given you a role in public affairs or motivated you to reach out to others? 

 

This special holiday edition of our newsletter is our attempt -- perhaps unsuccessful for all of you, but totally sincere and hopefully realistic at least for some of you -- at getting you to look at your life and ask:  What good can I make of the worst thing in my life?  If it makes you write a letter to a member of Congress, great!  If it makes you volunteer at a local hospital a few hours a week, even better!  But just take a minute and think about what you have learned from having this disease that you could share with others.

 

If you are lucky, as I have been, and it leads you to finding your voice, then you will know that, despite the horrors of chronic illness, you have been given a very special gift.  In my heart, that is how I think of my illnesses -- they are gifts that allow me to see the world from this perspective, in this way, in a way that brought me into your life, in a way that has led to you reading this right now. 

 

I am sick.  I face financial peril -- if Advocacy for Patients fails and I cannot work out of the house and have no health insurance, I will lose everything.  My shoes are just like yours. 

 

And I celebrate every day the fact that these shoes -- these illnesses -- have connected me to you.  THAT is worth celebrating.

 

Happy Holidays!

 

Jennifer