Chat Transcript, Dr. Robert Phillips, December 13, 2006
Live Chat with Dr. Robert Phillips
Coping with Lupus
Moderator
Good Afternoon. Welcome to the second of an on-going series of live chats with various experts on lupus. This chat is hosted by the Lupus Foundation of America, the nation’s leading nonprofit voluntary health organization dedicated to finding the causes and cure for lupus.
We are very pleased to have as our guest today Dr. Robert Phillips. Dr. Phillips likely is well known among people with lupus. He is founder and director of the Center for Coping, located on Long Island, New York. Dr. Phillips is a licensed psychologist who has been in private practice since 1975 and who has, throughout his career, published and spoken widely on coping with physical ailments and other psychological topics. Dr. Phillips, the published author of more than 30 books, has presented over four hundred papers and talks at seminars, conventions, and meetings throughout the United States and internationally. He has served on the Board of Directors of the national Lupus Foundation of America, as well as the Patient Education Committee and the Lupus Now Editorial Board. Dr. Phillips also serves on medical advisory boards of, and is the psychologist for, a number of other major local and national organizations.
Please understand that Dr. Phillips is a psychologist and focuses his practice on coping with chronic diseases. Questions concerning specific medication regimens are best asked of your physician.
Many of Dr. Phillip’s books and other publications are offered for sale through the LFA website store. Periodically you will see banner advertisements for his books above the chat window. You can purchase these books by downloading the order form and faxing or mailing your payment information.
Before we begin, let me explain a little about the way our chat will be conducted. This is a moderated chat, which means that I will ask Dr. Phillips questions that have been submitted you and other members of the audience. You can submit a question either by sending your question by email to question@lupus.org or by entering it into the light green chat bar at the bottom of the chat window.
Likely there will not be enough time to get to every question that is submitted. I will attempt use as many as possible during the hour-long chat. Whenever possible, I will group similar questions together. If I am not able to use your question today, please accept my apology.
Without further delay, I would now like to welcome Dr. Phillips to our chat today. Good Afternoon Dr. Phillips.
Dr. Phillips
Hello everyone!
Moderator
Our first question comes from Mabel in Ghana. What are some of the do's and don’ts for a person with lupus that can help them live better and have more energy?
Dr. Phillips
Good question... Most people with lupus experience energy problems, especially because fatigue is such a common problem. Do expect fatigue, and do make sure you include rest in your daily routine. Do prioritize the things you need to do so you'll get the most important things done while you have energy. Don't be upset with yourself if you can't do everything. (after all, neither can I!)
Moderator
Our next question is from Jen in New York. I'm 37, mother of 3 (13, 9, 5), diagnosed with Lupus one year ago, symptomatic for last three years. The past year has been difficult physically for me and I've had to work from home the past three months due to lupus complications and have had a couple trips to the hospital. My daughter who is 9 seems to take things the hardest and even though it seems like things are getting better she is upset frequently about my condition and the possibility that I could die. We reassure her that this is unlikely and try to encourage her to talk to us about her thoughts and feelings. Do you have any recommendation on how to help her through difficult times?
Dr. Phillips
Jen, the best way to help children deal with lupus is for you to be dealing with it well. The fear of dying is very common for children whose parents have any kind of illness, especially if they see you "not being yourself" because of the lupus. Keep talking with her... reassuring her (realistically)... and let her know she can always ask you questions. However, don't feel as though you have to force her to talk to you there may be some times that she doesn't feel communicative. But your willingness to talk to her, and your efforts at hearing what she has to say, along with your working to deal with your symptoms as best you can, will help.
Moderator
Is there one physician that can take care of both my psychological and neurological problems caused by lupus?
Dr. Phillips
Although I'm not a physician, I'll try to answer this question. Obviously, neurologists are specialists in dealing with neurological problems. Most physicians do not have the training to deal with the psychological problems caused by lupus. However, be aware that neurologists are trained in the mind-body connection because of their work with the nervous system, so they are very tuned in to many of the psychological problems that may be experienced. However, my recommendation would be to look for separate professionals who specialize in helping treat the particular problems you are experiencing.
Moderator
The next question was submitted anonymously. How can I tell if my emotion problems are from Lupus or the medications I am taking?
Dr. Phillips
It's often difficult, if not impossible, to be able to tell and the emotional problems you're experiencing may be due to issues that have nothing to do with lupus or medications as well. So the best thing to do would be to work with your physician, or psychologist, or other specialist to try to figure out why you're experiencing the problems you are, and help you to deal with them effectively.
Moderator
The next question is from Samantha in Seattle, Washington. How does dealing with a serious disease like Lupus psychologically affect a spouse? Are there things that the person with the disease and their spouse should remember to help them cope with Lupus?
Dr. Phillips
The best answer... it depends on the spouse! Different people respond differently and spouses, like all significant others, may experience a feeling of helplessness; they see the person with lupus suffering and feel unable to do much to help. That can be very frustrating. On the other hand, there are spice (that's my word for the plural of spouse!!!) who try to ignore or deny any problems and that can be more frustrating for the person with lupus. The best two things that the person with lupus and their spouse should do to help them cope is communicate and be flexible. Being able to talk things out, constructively, and mutually supportively, is invaluable in helping to deal with lupus, and being flexible is essential, because there are always twists and turns along the path of life, and lupus may add to those twists and turns.
Moderator
The next question is from Karen in Lawton, Oklahoma. Is there any proof that acupuncture could help with the pain, depression & weight gain caused by lupus? Is it something you would recommend?
Dr. Phillips
There is no proof that acupuncture will universally help with pain, depression and/or weight gain; however, there are many people who swear by acupuncture and, as such, may be a treatment modality worth considering the best way to proceed would be to learn as much as you can about it, speak to your physician about its appropriateness, and then get recommendations for a qualified practitioner, preferably one who has worked with people with lupus before you.
Moderator
The next question is from DC in Finkesburg, Maryland. Why does it seem that mental stress and mental overexertion flare lupus symptoms as much as physical stress and exertion do?
Dr. Phillips
There is no way of being able to compare factors as to the role they play in causing flare; however, it is well accepted that mental stress and overexertion can exacerbate symptoms. It may be that for you, these triggers are more significant and overwhelming in your life, and hence they have a comprehensive mind-body reaction.
Regardless... it makes sense for anyone with lupus to reduce stress and overexertion to a healthier level.
Moderator
The next question is from Jackie in Greenville, South Carolina. I have purchased your book COPING WITH LUPUS and found the section on Quick Release very good for patients in S.C. Have you developed any additional techniques that we can use?
Dr. Phillips
Hopefully, the Quick Release is helpful for people in other states besides S.C.! But seriously... the Quick Release is just one of many types of relaxation techniques that can be helpful for anyone with lupus. I usually tailor the relaxation procedures, images, and applications to the person I'm working with at the time. I'll suggest images that can be helpful for their symptoms... so, for example, if you're experiencing headaches, you might want to imagine a gently, soothing head massage. By practicing the Quick Release and other relaxation techniques, you help to condition your body to relax more quickly. This can reduce the impact of pain and other symptoms.
Moderator
The next question is from Dale in Maryville, TN. I have had SLE since 1981, ups and downs...Does Lupus ever get better with age?
Dr. Phillips
Congratulations (?) on a quarter-century with lupus. Are there awards for such an achievement?... Seriously, age is not predictive on improvement. Ssome people see their symptoms diminish, and possibly go into remission, as they get older and others see no change or a worsening of symptoms. The best answer is to continue to do the best you can to take care of yourself, regardless of your age... and always look forward to the hope of a "better tomorrow".
Moderator
We are approximately half way through our time for today. The next question comes from he next question is from Rita in Florence, Mississippi. I feel like my depression is worse every time I get a flare what else can I do for this?
Dr. Phillips
I'll give you a one-word answer and then explain. Anticipate! People often get more depressed if they are hoping that they won't have another flare, or they're hoping their symptoms go away, and then they're devastated when, for whatever reason, they go into another flare. Try telling yourself that you are gaining in experience in how to handle your life, both when you're in a flare and when you're not. Be positive about your ability to "ride out the storm" when you go into a flare, make plans for the relaxing things you'll do when you're less able to be physical, and you'll see that, although you won't want a flare, you'll be less depressed if and when it does happen.
Moderator
The next question is from Kathleen in Breham, TX. 10 years ago I was diagnosed with discoid lupus and a nueromuscular disease. I suffer from fatigue, muscular and joint pain and depression. I have seen many specialists over the years, but have been unsuccessful in finding someone who really seems to understand what Lupus patients go through. What can I do to enhance my own mental health?
Dr. Phillips
For many people, it is very important to be able to talk with others who have lupus or at least understand what individuals with lupus go through. And it's unfortunate that you have, as yet, been unable to find someone to does understand. Maybe some of the people who are participating in this chat would like to talk to Kathleen, or correspond via e-mail. There are telephone support groups in different parts of the country as well, and you may want to contact the national office of the LFA for additional suggestions as to how you could connect with others who understand what you're going through.
Moderator
The next question comes from A. in Houston, TX. I work 40 hrs a week and I don't have energy for much else. I'm depressed most of the time & I take medication. How can I improve my life living with Lupus?
Dr. Phillips
If you are depressed most of the time and are on medication, I'm hoping that you're also talking with a mental health professional, one who is strategic and can give you suggestions for improving your life. For right now, let me suggest that you start with little tiny steps... plan things you'd like to do and attempt them in short spurts;
focus on the quality of your activity rather than how long you're able to spend doing it. F or example, if you enjoy reading, but often seem too tired or your attention wanders, try seeing the pleasure you can get out of reading a page, rather than reading a whole book or even a chapter. Taking "bite-sized" steps to adding activities that you enjoy to your life can be a good starting point.
Moderator
The next question comes from VZ in Kalamazoo, MI. What suggestions do you have for Lupus patients who are trying to cope with Lupus "fog," where a person suddenly has problems remembering?
Dr. Phillips
The very first suggestion would be to speak to your physician, to make sure there are no medical reasons for this "fog". If there are no medical reasons, there are two things to try. First, try to do things a little at a time, and be prepared for the fog to roll in, so that, if necessary, you can take a break from what you're doing until your mind clears. And second, try not to put pressure on yourself, or criticize yourself for the fog, because that can increase your stress and diminish your ability to function. This "fog" sensation is very common... and as with many symptoms you want to learn how to handle it better... and by reducing the pressure you put on yourself you'll notice that, in many cases, it will happen less often, last shorter periods of time, and not feel quite as "foggy".
Moderator
The next question comes from Marcy in Sheridan, Oregon. How does a lupus patient deal with the on-going grief and loss over their lifestyle and health?
Dr. Phillips
The same way that people grieve the loss of a loved one, people with lupus may grieve the loss of their former lifestyle and health. However, grieving should not be a long, ongoing event. If someone is grieving too long, it may suggest that they need additional strategies for coping, strategies they can get from coping books or mental health professionals. It is important to learn to accept one's life with lupus as it is... that lupus is now a part of your life, as much as the color of your eyes... and make a commitment to living the best life you can, despite lupus! Those of you who have heard me speak at meetings around the country know that there's a little saying I use to illustrate this concept."You have to let go of what was, and what could have been, in order to enjoy what is, and what still can be!" If you live by these words, you'll find that the grieving will diminish and eventually stop.
Moderator:
From Jenny B comes this question: I am a 25-year-old lupus patient struggling to find a job that would accomodate my illness. I want to be successful and committed to a good job, but I've struggled handling the stress. I am depressed that I won't be able to "keep up" and competitive workplace.
Dr. Phillips
It is commendable that you are motivated. Keep up that positive attitude. Be persistent in pursuing a job that you enjoy, and keep telling yourself that any negatives that lupus may cause as far as your working is concerned will be overshadowed by the qualities and motivation that you bring to your job. Always focus on doing the best you can, instead of being down on yourself if you can't do everything you want to do. In general, any time someone questions whether or not counseling can help with a problem, it can! I'm less concerned with whether you're depressed, overwhelmed, sad, down, or any other "label". What I'm more concerned with is that fact that you're not feeling happy the way you might want. So act... do something about it... speak to a professional who can help you to figure out how to conquer this feeling of being overwhelmed.
Moderator
We have approximately ten minutes left in our chat time for today. Our next question was submitted by Mary M. When I get a flare I feel sickly and not in control; I am getting over one right now. I try to remain calm, and now that I am retired, I do not have to worry about missing work and going to work feeling like a dishrag, but how can I keep from worrying about planned events that I may miss? I feel like I make myself sick by thinking about "plan B", ie, what I will tell people, disappointing people, etc. You said to anicipate, but it only makes things worse for me.
Dr. Phillips
If anticipating is making things worse for you, you may only be anticipating, and not preparing positive steps to help yourself deal with an upcoming situation. The two often go hand-in-hand. Just remember, you can only do the best that you can do. Those people who care about you will understand if illness is preventing you from participating in all the activities you'd like to enjoy, and those pople who don't understand, well, those people are ones that you shouldn't worry about so much. If all of your thinking is making you sick, my feeling is your thinking is too negative, with not enough realistic, positive content to help you to deal with the inevitable difficulties that virtually everyone with lupus encounters. So start working on your thinking. Ask yourself what someone else might say, someone who seems to deal with these types of situations better than you currently are. and work on thinking more like that person does. You can do it!
Moderator
This question comes from Rica. Is depression is a state of mind or really a state of health for lupus patients?
Dr. Phillips
Experts believe there are two main types of depression, endogenous and exogenous. Endogenous depression refers to a state that might be considered to be more biochemical, and may be health-related, due to lupus, medication, and so on. Exogenous depression may be "reactive", meaning that you're depressed because of things going on around you, or, more importantly, because of the way you think about the things going on around you. So that would be more similar to what you're referring to as a state of mind. In either case, there are things that you can do to help yourself. And it doesn't matter which type of depression you're experiencing, you can benefit from working on your thinking, talking to a professional, and, if you feel it would be helpful, considering anti-depressant medication.
Moderator
We are sorry but we are out of time for today. Dr. Phillips, would you like to give closing comments?
Dr. Phillips
First, I'd like to thank the LFA for inviting me to join all of you today, and to thank all of you for being here. I believe that one of the most important concepts in living with lupus is coping, and the difference between a happy person and an unhappy person is not what kind of lupus you have, what medication you're on, what symptoms you're experiencing, or any other factor, but how you cope with these issues. As such it's important to do the best you can to learn strategies that will help you cope more effectively, and I hope you've learned some today. In the meanwhile, let me close with the motto of my Center for Coping, "No matter what problem you may face... you can ALWAYS improve the quality of your life." I wish you all a happier, healthier 2007 and on from there.
Moderator
Unfortunately, that’s all the time we have for questions for this session. We would like to thank Dr. Phillips of the Center for Coping for joining us today and for answering such great questions.
Please join us next week at 7:00 p.m. Eastern standard time when our guest will be Dr. Victoria Werth, Chief, Division of Dermatology, at the Philadelphia Veterans Administration Hospital and Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine in Philadelphia.
Dr. Werth received her medical degree from Johns Hopkins University in Baltimore and served her internship in medicine and a residency in internal medicine at Northwestern Memorial Hospital in Chicago. She is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. Among her many awards and honors, Dr. Werth is listed in Who’s Who in America and Best Doctors in America.
Thank you for joining us for today’s chat. A transcript of the chat will be available shortly on our website.
This concludes today's chat.
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