In the first few years of appointments with my rheumatologist, I received a diagnosis and a drug treatment plan, as well as referral to specialists as needed, such as physical therapy or anti-inflammatory infusions at the hospital. However, I did not receive any information on the condition with which I was diagnosed. That, I had to research on my own.
From what I often read on chronic illness forums, this is a common scenario. Paradoxically, I often read the opposite on health websites—that we will receive information and education from our doctors on what ails us. I also often read well-meaning articles about assembling our health care team—doctors and health professionals that will communicate with one another and that one of them will serve as the care coordinator. Sounds great! Where can I sign up??!
My own experience, and that of many other chronic illness patients, is that we, the patient, end up coordinating all of our own care, and educating ourselves about the diseases we have. It is a daunting task being your own care coordinator, educator, and health insurance liaison, on top of dealing with a myriad of symptoms from chronic illness and the necessary self-care that goes with it.
If you live with a chronic illness(es) that affects your daily life, you already know it’s often a full-time job managing your own care. It sucks when you don’t feel well and you have to make phone calls and fill out paperwork to get the care you need and paid for by your insurance.
Here are some tips to empower you with knowledge on how to live with your diagnosis:
I hope my experiences will help you begin to navigate your own ongoing self-care with chronic illness. Remember you are not alone. There are many of us living with chronic illnesses, and we support one another through blogs like this, and through online forums, and social media. Welcome to the club!