A Delicate Balance: Living Successfully with Chronic Illness

Last Editorial Review: 10/23/2003

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.

Moderator: Can you forget your illness or is it always with you?

Milstrey-Wells: Some days are better than others, and it's probably not unhealthy to "forget" that you have FMS, but it will always be with you. More than forgetting about it, what you really need to do is to find healthy ways to live or coexist with it. When you have well developed self-care routines that might include exercise or meditation, or some type of behavioral therapy, and your fibromyalgia is under control, I think you can lead a somewhat normal life. But you always have to remember that if you spend a little extra of your energy today, you might have to pay for it tomorrow. I heard a physician speaking about FMS say that you can do anything you want with this illness. You just have to realize what it will mean for you. For instance, when I travel, I have to take a day before just to get ready, and a day after to recover.

wabe_grb_webmd: How can you deal with FMS day to day without going crazy? I'm having quite a hard time with this diagnosis.

Milstrey-Wells: I think that finding support is absolutely critical to dealing with any chronic illness, but especially FMS, because it's still not well understood, and still not well accepted. You can find support at a local support group if there's one in your area. There's a lot of good support available online, or you may want to consider some type of professional therapy. I always tell people not to think of the need for therapy as a personal weakness because, as I mentioned earlier, being sick is hard work. When a person can unburden their fears and frustrations to a trained and impartial observer, therapy can literally be life saving. When you find a good support group, or an individual or two that you can talk to, it's a wonderful relief to find others who speak the same language. When you say that you are tired to a person who also has FMS, they know what that kind of fatigue feels like, in a way that someone without FMS can't. But choose a support group carefully. Beware of those in which you are encouraged to complain, or those in which members are focused on finding the treatment that will cure them. You should leave a support group feeling helped and guided, and a little less alone.

wabe_grb_webmd: I don't think I am being a "professional patient." What is it exactly and what can I do to improve??

Milstrey-Wells: I think as patients, our first responsibility is education. We really need to learn as much as we can about our illness, so that we can make good treatment decisions with our physician as our health care partner and guide. Ultimately, our health care is in our own hands. We should be smart about where we get our information. There's a lot of good information online, but there's a lot of bad information out there as well. We need to look for information from reliable sources, such as major medical schools or professional associations, and beware of folks with a product to sell. Remember the old saying, "If it seems too good to be true, it probably is." We also need to be able to ask questions and to be assertive, but remember that assertive is not the same as aggressive. We don't want to view the doctor as the enemy. Most of all, we have to trust our own instincts. If something doesn't feel like it's right for us, then it's not.

wabe_grb_webmd: Do you have a checklist to prepare you for a visit to your physician?

Milstrey-Wells: I like to take a list of questions, but I've learned to limit the list to the most important problems I'm having at that time. Sometimes doctors cringe when you pull out a list, but most are fairly receptive to answering a limited number of questions. If you're on a number of medications, it's probably helpful to have a list of them, including dosages you take. I find that when "fibro-fog" sets in, this is something I tend to forget. Also, I've heard it recommended that you take another person with you who can perhaps hear some of the things the doctor says that you might miss, if you are especially anxious or not feeling well.

Moderator: Do you have a checklist for physicians of fibromyalgia patients?

Milstrey-Wells: The first thing I would ask a physician is that they validate how we're feeling. The single most important thing a physician ever said to me is, "I believe you don't feel well." He couldn't give me a diagnosis yet, but he didn't dismiss me because he didn't know what I had. I think having a doctor who listens is critically important. I like a doctor who is willing to answer questions, and also one who says, "I don't know" when they don't have an answer. I have a great deal of respect for doctors who admit that medicine is as much an art as a science. I like a doctor with whom I can collaborate, I want to be advised and guided but not told what to do, and I like a doctor who believes that I can feel better, even if my disease can't be cured. One phrase I'd watch out for is that "you're just going to have to learn to live with it." Well, of course you are. But with good self-care and support, you can learn to live well.

wabe_grb_webmd: I am quite frustrated by my family. It's like they don't believe that I'm sick. What can I do?

Milstrey-Wells: That's a very typical and difficult situation. When we look well, it's sometimes hard for others to believe that we're sick. You might try, first, to acknowledge their feelings because they are very real. You might even say something like, "Some days it's even hard for me to believe that I feel so poorly, when I look so well." You can try to educate them by giving them information to read, or by taking them to the doctor with you, you might even try to connect them to some fellow family members who have FMS. But in the end, you may have to accept their lack of acceptance. They don't have to understand your limitations, but they do have to respect them. When you have a chronic illness, everyone in the family suffers a loss, and it may just take time to reach a new equilibrium.

Moderator: How is fibromyalgia viewed by the general public?

Milstrey-Wells: I think the FMS is becoming more accepted. It's certainly being diagnosed more often, and earlier in the process. For some folks, it took years to get a diagnosis, but the downside of its being diagnosed more often is that some folks tend to think of it as the "disease of the day," if you will. Still, there's exciting new research about neurochemical imbalances in the brains of folks who have FMS, so some day, when someone tells you that it's all in your head, they just might be right!

tbarr_lycos: Do you think it is better to start with a general practitioner or guess on a specialist to see?

Milstrey-Wells: In today's "Brave New World" of managed care, your general practitioner is probably the "gate keeper" in your health care organization. You may have to start there regardless. But if you suspect you have FMS, I would ask for a referral to a rheumatologist. You may need to see other specialists as well, depending on your symptoms, but typically a rheumatologist manages FMS care.

wabe_grb_webmd: Can you give us an idea of the diagnosis and treatment process?

Milstrey-Wells: Often diagnosis for FMS is a diagnosis of exclusion. This means that first the doctor must rule out any of the more serious medical conditions that share symptoms with FMS. I don't mean to imply by that that FMS isn't serious, of course, but the symptoms are fairly nonspecific, and could be attributed to any number of diseases. Usually a doctor will listen to the patient describe his/her symptoms and do a tender point exam if FMS is suspected. As I mentioned earlier, non-restorative sleep is often a hallmark symptom of FMS, but this is not the same as insomnia, necessarily. My doctor asked me very specifically not if I was sleeping well, but how I felt when I woke up in the morning. He asked me if I felt rested, and I got a puzzled look on my face, because I didn't know that's how you were supposed to feel after a full night's sleep. I often wake up more tired than when I went to bed. But had he asked me if I was sleeping okay, I probably would have said yes, because I'm able to stay in bed for seven or eight hours at a time.

Moderator: Earlier you spoke of the importance of acceptance. Can you explain that?

Milstrey-Wells: It seems somewhat counter-intuitive to say that you have to accept being sick before you can get well, but I think that's absolutely vital. When I began writing my book I was still quite angry about being sick, even though I've lived with health problems for more than half my life. I thought that accepting myself as a person who was sick was the same as admitting that I had failed as a human being. Instead, I discovered that being human means having limitations and flaws, and that as long as I continued denying my health problem, I would never take the steps I needed to get well. The people I interviewed for A Delicate Balance taught me some very important lessons about acceptance that I'm happy to share with you. To begin with, acceptance isn't forever. Just as our physical symptoms fluctuate from day to day, so, too, does our ability to accept the changes that chronic illness brings. In a similar vein, acceptance isn't about the future. Acceptance is only about today. Accepting how we feel today allows us to take care of ourselves when we need to. Also, acceptance is not an admission of failure. Remember that inappropriate comparisons are always self-defeating. If we compare ourselves to people who don't have a chronic illness, we're bound to come up short. But everyone has limitations, often we just can' t see them. Acceptance doesn't mean giving up, however. Accepting our limitations isn't the same as letting our disease take over our lives. My friend, Sally, who has chronic fatigue syndrome likes to say that acceptance doesn't mean we're surrendering, just that we're advancing in a new direction. Finally, and most important, acceptance is not denial. Acceptance doesn't mean pasting on a smile and denying reality. Rather, acceptance is a positive choice to use the energy we have to move forward with our lives.

chilibeans_webmd: Is there anything that people need to do to be protected under the Americans with Disabilities Act (ADA)?

Milstrey-Wells: People with chronic illness should indeed be protected by the ADA. One of the best ways I've found to seek accommodation is to carefully research what you might need, and present alternatives to your employer. In other words, you go in with a solution, rather than with a problem. You might want to consult a local independent living center for more specific information on the ADA.

chilibeans_webmd: Why are pain killers so controversial for FMS patients?

Milstrey-Wells: Because pain killers are controversial, period. There is a good deal of recent literature that indicates that pain associated with any condition is under treated in the medical community. I think the good thing about being a patient now is that this is being recognized, and is beginning to be dealt with. I think many more physicians are now realizing that pain itself, chronic pain in particular, is itself a medical condition worthy of treatment.

wings-of-a-prayer_webmd: What is the ADA?

Milstrey-Wells: The Americans with Disabilities Act, and it protects you in hiring and employment decisions. Title I of the ADA passed in 1990 ensures that we may seek "reasonable accommodations" to help us do our job, and the law requires that our employers respond to our requests. The ADA applies to all employers with 15 or more employees. An individual seeking accommodations under the ADA must be otherwise able to perform the essential functions of the job. In other words, it won't apply to someone who is not qualified for the position. An employer cannot refuse to honor an individual's request for accommodation unless the company can prove that doing so would create an undue hardship. For more information on the ADA, visit the Equal Employment Opportunity Commission web site at www.eeoc.gov or the U.S. Department of Justice ADA home page; that is www.usdoj.gov/crt/ada/adahom1.htm. 

Moderator: Well, our time is about up. Ms. Wells, do you have any parting comments?

Milstrey-Wells: A Delicate Balance was just released in paperback and should be available at local book stores. It's also available online. You can read more about my book on my web site, which is www.adelicatebalance.com, and there's a link for ordering on the site. I want to thank you all for attending the chat. I've enjoyed it.

Moderator: Thank you for being with us this afternoon, Ms. Wells.

Moderator: Our guest this afternoon has been Susan Milstrey-Wells, herself diagnosed with Sjogren's syndrome and fibromyalgia. Wells is a professional writer and editor. Currently, she writes about mental health, homelessness, and managed care for the federal government. Wells is also the author of A Delicate Balance: Living Successfully with Chronic Illness.

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.



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