I have been asked to give a talk to a number of other patients with Crohn’s disease. The topic has been left up to me, but they don’t want the usual summary of the law or a tour of the health insurance landscape. They want to be inspired.
I’m flaring, so the thought of being inspiring seems pretty daunting at the moment. It’s hard to come up with inspiration for anything when your butt hurts and you’re dehydrated and cranky. So I thought I would sort of try it out on you.
When I first went to see Dr. Ellen Scherl, whose group I’m speaking to tomorrow, I was deathly ill. I had active disease throughout my digestive tract, from my duodenum on down to the rectum. I had lost about 40 pounds in only a couple of months. And my kidneys weren’t working, so fluid was amassing in my body and everything was swollen. A doctor gave me instructions on what to do if the skin on my calves split. That’s when I decided that I’d given the doctors here in Connecticut enough of a try, and got a friend from the Crohn’s & Colitis Foundation of America to get me an appointment to see Scherl immediately.
She figured out a bunch of things during my first visit, and over time, after a couple of surgeries and a load of medicine and horrible stuff like liver biopsies and an infection in an incision that took months to heal, I got better. Well, what passes as better, anyway.
But in the meantime, I realized I couldn’t keep going to court as a trial lawyer. I had worked hard to establish a career as a litigator and I loved it. But if I couldn’t get out of the house every day, I couldn’t commit to being able to be in court. So I started helping other patients from home. And then I realized that, if I was going to do this for a living, I had to form a nonprofit so I could earn enough money to live on – because I could not charge other patients for my services. So at my sickest, I started Advocacy for Patients with Chronic Illness, Inc.
It’s been six years since then. I now have an administrative assistant, a new lawyer, and we are moving to commercial offices in September. We have worked with well over 4,000 patients, many of whom have come back to us for several different problems over the years. Our success rate on insurance appeals is 80-85 percent.
I think you have to be somewhat crazy to start a nonprofit – or any business – when you’re as sick as I was at the time. But here I am, still standing, and doing something worthwhile. I do miss court, but every once in awhile, I get to save a life. And what could be more rewarding?
I think the most important thing I’ve learned, though, is that every time you flare, you go through a whole emotional process that’s much like grieving a death. You go through denial, anger – all the range of emotions – until you reach acceptance. Acceptance doesn’t mean you like it, or that you stop trying to be as well as you can. But when you accept your disease and stop denying it or fighting it, you get to peace. I’m not there every day – nobody is. But I’ve been there, and I’ll get there again.
Is that inspiring? I don’t know. But I do know that living with chronic illness is a special kind of challenge. Pretending it’s not is a waste of energy. The key is to learn to find a way to accept the challenge.
Edited by Alison Stanton