I’m a 53-year-old lawyer with Crohn’s disease and gastroparesis. I had a pretty exceptional career as a trial lawyer until my Crohn’s disease stopped me, nearly dead in my tracks.
I started looking for resources for myself on the internet, and what I found were communities of patients who had questions about subjects that were pretty easy for me – health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location.
And so I started answering questions. Then someone asked me to handle her disability retirement appeal – and I won. Then an insurance appeal – I won again. Here was something I could do that would make a difference in the lives of other people like me – others with chronic illness – and I could do it from a computer, a phone and a fax machine.
I realized fairly quickly that I would have to figure out a way to earn a living if I was going to provide these services for free. It really never felt right to charge a patient in crisis, so I started a nonprofit and got a tax exemption so that I could fundraise.
And so, Advocacy for Patients with Chronic Illness was born.
We provide free assistance to patients with chronic illnesses nationwide. We turn nobody away; we may not be able to solve every problem, but we can listen and strategize and, well, care. If you’ve been on the phone calling agency after agency for help, you know how much it matters that we answer the phone, return all calls and emails on the same day they are received, and if nothing else, we give people some dignity. That can mean a lot when you’re in the midst of a crisis that requires you to tell complete strangers that you’re flat broke and can’t afford the medicine that will keep you functioning.
It’s my hope that, in my writing for EmpowerHER, I will share some of what I’ve come to consider survival strategies for living with chronic illness, as well as some legal tips and hopefully some resources, as well. If you have a question or a suggestion for something I might write about, feel free to email me at patient_advocate@sbcglobal.net.