A Delicate Balance: Living Successfully with Chronic Illness
WebMD Live Events Transcript
Event Date: 08/07/2000.
Living with a chronic illness such as fibromyalgia or rheumatoid arthritis is not easy. Join Susan Milstrey- Wells, herself diagnosed with Sjogren's syndrome and fibromyalgia, for a discussion on how to cope with a chronic condition.
The opinions expressed herein are those of the guest's alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Greetings and welcome to WebMD Live! Our guest this afternoon is Susan Milstrey-Wells, herself diagnosed with Sjogren's syndrome and fibromyalgia. Milstrey-Wells is a professional writer and editor. Currently, she writes about mental health, homelessness, and managed care for the federal government. She also is the author of A Delicate Balance: Living Successfully with Chronic Illness.
Thank you for being with us this afternoon, Ms. Wells.
Milstrey-Wells: Thank you for having me.
Moderator: Can you begin by telling us a little about your background and what you are working on right now?
Milstrey-Wells: Sure. I've been a professional writer for more than 20 years. The last 12, I've written about homelessness for the federal government. I've also been what I like to call a "professional patient" for more than half of my life. In addition to FMS (fibromyalgia syndrome) I also have Sjogren's, which is an autoimmune disease, and IC (interstitial cystitis), chronic inflammation of the bladder. I rode a delicate balance, because chronic illness doesn't come with an instruction manual, and I wanted to know how others coped every day. Relying on my training as a journalist, I interviewed more than three dozen women and men throughout the U.S. and Canada. I met a remarkable group of people whose stories I'm proud to share in my book. We laughed and cried together, and I learned much, not only about my health, but also about myself. In sharing the information I received, I wanted to give back some of the validation, insight, and support that was given to me. A Delicate Balance is the book I wish someone had given me when I first became sick. What sets my book apart from others about chronic illness is that it takes readers through the very real struggles we go through on the journey of self-acceptance. There's a long road between becoming sick and accepting life with a chronic disease, and A Delicate Balance shares with readers some of what I learned along the way.
Moderator: What is the key to living well with a chronic condition?
Milstrey-Wells: I think one of the most important is to realize that being sick is hard work. We have to recognize that we can't move past the difficulties we face until we acknowledge them. Those of us who are sick can't afford to bemoan our fate for too long, because then we're not only sick, we're sick and miserable. The second lesson I learned is that we have a right and responsibility to get better. Even if our disease is not likely to be cured, we can lead a healthier and more fulfilling life by learning some good self-care techniques.
Moderator: Is this good advice for other chronic conditions aside from fibromyalgia?
Milstrey-Wells: Absolutely. Any health condition that's ongoing, that's limiting in any way, that's painful or fatiguing, requires an understanding of not only the condition, but of who we are and how we're going to come to deal with it. Having a chronic illness often prompts a journey of self-discovery. I don't think we have to get sick to do this, but being sick maybe gives us that extra nudge to figure out what really counts in life. If you are sick every day, you really want to be careful of how you spend your energy, and really think about where you want to direct what often is limited energy. Sometimes I like to think of my energy as money in the bank, and I know that if I want to spend it, I have to save it first. Once it's gone, I need time to build it back again. I don't want to spend my energy being angry about being sick, so that means I have to work hard at accepting how my life has changed.
Moderator: What are the symptoms of fibromyalgia and what should one do if they think they may have it?
Milstrey-Wells: The hallmark symptoms of FMS are muscle pain, and non-restorative sleep. I believe it was in 1990 that the American College of Rheumatology issued diagnostic criteria for FMS, and that includes pain in at least 11 of 18 tender points on various parts around the body. FMS really is just not muscle pain, it's widespread muscle pain. Typically the pressure points are sensitive to a very light touch, something that wouldn't be painful to someone without FMS. More primary care physicians are now recognizing and diagnosing FMS, but the specialists who are most likely to deal with it are rheumatologists. You do have to choose carefully though, because not all doctors, including rheumatologists, believe in FMS. If you think you may have it and you are told that it's in your head, it's probably time to find a new doctor. For many patients, FMS begins after a serious illness or injury, such as a car accident or a period of prolonged stress. If you have a diagnosis of FMS, one thing you should always be careful about is attributing all of your symptoms to the illness. If you experience a new symptom, or one that's especially troubling, always check it out with your doctor.