Chat Transcript for Dr. Robert Phillips
October 10, 2007
Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Robert Phillips.
Dr. Robert H. 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 has published more than 30 books, including the very popular Coping with Lupus. He has presented over four hundred papers and talks at seminars, conventions, and meetings throughout the United States and internationally.
We welcome Dr. Robert Phillips, and thank him for joining us this afternoon.
Moderator
Without further delay, let's begin with our first question. When is the 'right' time to discuss/disclose having lupus to someone you're dating (assuming it is becoming serious)? -- Englewood, NJ
Dr. Phillips
Greetings from cloudy Long Island. This is a good question ... one that I'm asked frequently. There really is NO right time to discuss/disclose having lupus. It's really up to you to determine how serious the relationship is becoming, and how comfortable you feel in sharing information about your lupus. One "rule of thumb" that I recommend you be aware of ... the more comfortable you appear in discussing your lupus ... and having lupus ... the easier it'll be for the person you're sharing this information with to accept it.
Moderator
Throughout my 13 years of having lupus, people, including family, sometimes don't believe I am sick or they don't believe the severity of my lupus. Back in my early days, I didn't look sick so I can understand that people would have a hard time understanding my pain. For the past 2 years I look terrible. If I am having a good day and I am out doing stuff, people have a hard time believing that I am sick because I was in bed for days and then all of a sudden I'm fine. I even had a neighbor tell me if I act like I feel good, I will! People just don't understand. Do you have any clever comebacks to people when they make such comments? -- Ft Myers Beach, FL
Dr. Phillips
This is a great question. Those of you who know me are aware that I ALWAYS have comebacks (although they may not always be so clever!).
It is true that people don't understand. And because of that, it's important that you not bang your head against the wall trying to get people to understand. Instead, try to explain that you really wouldn't be complaining if you didn't have a legitimate reason, and you'd like them to try to understand even if they've never walked in your shoes.
As for the neighbor who said if you act like you feel good then you will, you could always say, "If you speak like you're dumb, then ..." (then prepare to run away fast!)
Moderator
Ever since I was diagnosed 8 years ago, I have been to counseling but I find it so very hard to say no to family members, such as turning down requests to watch grandkids, visits, etc. I feel so very guilty if I do but I know I don't always have the strength to do so. How can I get the family to understand better my illness so I do things for ME? -- Naples, FL
Dr. Phillips
First, you must be true to yourself. You know what you can do and what you can't. However, it certainly is difficult to be able to say no to people, so don't. Instead, say "I'd love to, but I can't right now." That works a lot better.
As far as getting your family to better understand your illness, there are so many wonderful books, brochures, information sheets, etc., that explain lupus and how it affects you, that you're better off letting them read that than you trying to explain it. But be prepared that people may not be as receptive as you might like them to be. But at least you know you're trying.
TLL
Any advice on how to handle a partner who gets very anxious every time any new complication, symptom, or abnormal test occurs? Are there ways to calm them?
Dr. Phillips
Your question suggests that YOU don't get as anxious ... because you're asking how to calm down your partner. Regardless of who's anxious, it's important to ask the reason(s) for the anxiety. Anything new tends to trigger a fear of things getting worse. After all, if you were guaranteed that you'd never get worse, other symptoms, etc., that wouldn't cause such anxiety.
So it can be helpful to speak to your doctor, have your partner with you and able to ask any questions relevant to him/her, and be pro-active, saying, "What can we do to better handle this new complication, symptom, or abnormal test result?" By having a strategic plan, you'll feel more empowered to help yourself and your partner, rather than feeling like a victim.
JoJo
Having tried online dating, when do you tell someone you have lupus? Should you put it in your profile or mention it later? I have had two people interested until they hear the word lupus; suddenly everything changes. One said I should have mentioned it earlier; the other stopped corresponding.
Dr. Phillips
As I mentioned earlier, there is no right time to tell someone you have lupus. Yes, there are some people who put it in their profile (and it might be interesting to ask them what made them decide to do so). Some people are proud of the way they're handling their lupus; some people want to make sure that anyone and everyone knows about their lupus from the very beginning.
But that doesn't mean this is what you must do. It is perfectly ok to try to establish a relationship before disclosing that you have lupus, and if things change after they find out, well then, that's not the person for you. In addition, if someone asks you why you didn't mention it earlier, there are a number of ways of responding (some of which might not be appropriate for this "family chat."). But you can say that this was a private issue for me, and you really wouldn't talk about any other personal information until you knew that something nice was being established.
Remember, this is about you. Your preferences ... your comfort level ... and no one else can tell you how to feel.
maine girl
My boyfriend often jokes that he is dating two women: me and lupus. I wonder if anyone else feels this way in their relationships with partners with lupus. What can I do to make it easier on us as a couple ... any suggestions?
Dr. Phillips
My first reaction would be to ask what differentiates the "two women?" It's true that you may feel differently, both physically and emotionally, when your disease is more active, but I'd want to know what your boyfriend is referring to. As far as what you can do to make it easier on you as a couple, keep communicating. Keep encouraging him to talk about what he's feeling but preferably from a point of view of what BOTH of you can do to keep things open and comfortable between you.
Moderator
Sometimes I feel my spouse hates me for having lupus. Any words of advice will help me. I need to keep on the right track. Thank you. -- Apple Valley, CA
Dr. Phillips
I don't know too many people who LIKE having lupus, and many people do HATE having lupus ... but that's different from hating YOU for having lupus. I'd start by making that distinction with your spouse. Get your spouse to understand that he/she doesn't hate you, he/she hates lupus and the impact that it has on you, on him/her, and on your marriage.
And realistically, you hate it too! So,it makes sense to figure out the things you can do TOGETHER to make this hateful situation more comfortable for both of you.
Anna
I'm married with no children. When I have weeks of "I feel good," my spouse assumes I'm okay. And when my days get tough thereafter, he says that I did feel good and was able to do things last week. How should I deal with this kind of situation? I don't want to be mad and angry at him.
Dr. Phillips
I think it's very important for anyone with lupus to be able to assertively explain, to all significant people in their life, that they know (more than anyone else) how they feel. And that no one should assume they're ok (after all, you know what it means to "assume").
You can remind your spouse that you enjoy when you feel relatively good and are able to do more things, and regret when you don't feel good, and can't do as much. It certainly doesn't help when someone (anyone!) else implies that you're not being honest about how you feel or what you can do. By being able to communicate this, constructively, it will help you not to be as angry.
tbraida
My boyfriend has lupus, and we are getting engaged. Do you have any suggestions for newly married couples and learning how to cope with living with someone who has lupus for the first time?
Dr. Phillips
First of all, congratulations on your engagement! One of the things that makes newly married couples enjoy newly married life is learning how to deal with new things. In your case, lupus is one of the new things but let's not assume that learning about living with lupus has to be a bad thing. By learning about it together, learning how to help each other, it can actually bring you closer together. So, once again, the best suggestion is to be able to communicate about lupus, how it's affecting both of you, what your concerns are ... Communication is the key (what a concept!).
Connie
I came in late, so I don't know if this has been discussed yet. I have a problem with a very low white blood count (leukopenia). For years, I've had to explain over and over again to family and friends that winters are very hard for me and I need to cut down on my socializing. Also if anyone is sick, then I can't go to the event. It also poses unbelievable problems with job searches. How and when do I tell an employer about my problem?
Dr. Phillips
Connie, there are two different important questions in here. First, many people have difficulty explaining symptoms and concerns to family and friends. All you can do is to try to present your information as best you can, possibly using written material showing that you're not the only person who feels this way, and hoping they'll understand. In certain circumstances, such as you're not going to an event if someone is sick, there's a very simple way of handling this: just tell 'em that your doctor does not want you going to such an event. This way you don't have to explain or deal with their disagreements; you're just "blaming" it on your doctor.
With regard to talking to employers, this still is a big problem, despite all of the advocacy efforts that have been made to "level the playing field." Tthe best way to respond is this ... don't lie ... but don't feel as though you have to give the whole truth (that's not lying). In other words, you don't have to say anything about lupus unless the job you're applying for requires activities that you may not be able to do (or may periodically be less able to do). In that case, you may need to say something. Otherwise, as we've previously discussed, you can decide what to say and when to say it.
scyeung
I have had lupus for about three years now, and my parents have been very supportive of me throughout all my symptoms and anxieties. However, sometimes I think they can be a little overbearing about it. I just started medical school this past August, and what I need most right now is their confidence that I can do it. It IS stressful for me, and I know I'm embarking on a somewhat stressful career, but it is what I have a passion for. From the beginning, they've been wary of my wanting to be a doctor. I've tried to tell them that I will be okay, but it doesn't help. Any advice?
Dr. Phillips
First of all, congratulations on being a DTB (doctor to be)! Yes it is stressful, but the fact that you're doing it anyway shows that YOU believe that you can do it, and at least want to try. Try to convey this to your parents. At the same time, let them know that if it really gets to be too difficult, and you're concerned that it will affect your health, you'll be honest about this as well. Until such a time when you feel that you CAN'T do it, you'd really like them to support your efforts, so you can have a united family on your side.
delossa123
How do you deal with family members who are always telling you that they know how you feel, even when it is obvious that they never will know? They have read the books and the literature, and still it is an ongoing battle of sorts. What can I say or do?
Dr. Phillips
A good question, and I'm sure many participants in this chat have heard that phrase. As frustrating as hearing this may be, consider the possibility that it is being said NOT because the person really and truly knows the way you feel, but rather as an effort to show concern for what you're going through.
You would know better than I whether or not your family members are saying this from a supportive point of view or not. But in my experience, saying "I know how you feel" is a "throwaway" type of comment, much the same as "How are you? Fine" is so common. It shouldn't always be seen as a comment to make you angry. We all know that unless someone has what you have, they can't POSSIBLY know how you feel, so it would probably make it easier for you by not getting angry when you hear these comments.
In addition, once they say that, you can move away from that to a more constructive discussion about how you'd like them to help you, or what you need to do to deal with your lupus. This is better than trying to argue with them, saying, "But you don't know how I feel"... and having the argument go back and forth.
just SAM
I need verfication that stress is a contributing factor to my SLE. My husband and I are in joint marital counseling and I tell him that we need to reduce the stress in our lives for my health (and for his). Stress isn't good for anyone. Perhaps if he reads this, he will better understand how together we can make our lives better.
Dr. Phillips
Stress can be a contributing factor to EVERYTHING! It always makes sense to do everything you can to reduce stress, for both physical and emotional reasons. Rrather than trying to figure out how much of a contributing factor stress is to your SLE (which NO ONE can determine), it's better to work together with your husband to identify the sources of your stress, and what strategies can help you to make your lives better.
Maggie
I need some guidance. I believe my daughter has lupus but the doctor keeps telling me she does not. She's fatigued, has achy joints, she had a blood test that came back negative. I know she meets several of the criteria for lupus. But still the doctor says it's not lupus. I don't know what to do. I want to help my daughter. Can you please help?
Dr. Phillips
Written material about lupus indicate that for an accurate diagnosis of lupus one must have 4 of the 11 established criteria. Negative blood work does not, by itself, rule out lupus, especially if so many of the other criteria have been met. Ii would definitely recommend getting another medical opinion, preferable from a board-certified rheumatologist to discuss your symptoms with the goal of getting an accurate diagnosis.
If you're not sure where to find such a physician, contact your local chapter of the Lupus Foundation. They have lists of physicians who could be available for you. If you don't have a local chapter nearby, call the national office of the Lupus Foundation of America at 202-349-1155.
Stew
I have lupus. Along with that, I seem to have mood swings. I have also been told I have a "bad attitude." Which I guess can be connected to these mood swings. I don't think I have a bad attitude, but I don't want to lose friends over this. I'm not sure what to do.
Dr. Phillips
Are you aware of your mood swings? That's an important first question. It's hard to something about them if you're not even aware how you're "swinging." You may want to ask your friends what they're seeing that make them feel you have a terrible attitude. Explain that you'd really like their insight because you don't want to lose friends, you don't want to have a bad attitude, and you'd like to stabilize any mood swings that you have.
If you find that you're having difficulty with this, it might be a good topic to discuss with a therapist who can ask you questions to help you identify the way you feel, why you feel the way you do, what contributes to your mood swings, and most importantly, what you can do about this.
Moderator
Can I not date someone if they have a chronic contagious condition? (herpes, chronic staph, etc.) It's so hard nowadays to find anyone who doesn't have something. And when they find out I have lupus, they seem to think they'll kill me if they kiss me! -- Canoga Park, CA
Dr. Phillips
Being careful with someone who has a chronic contagious condition makes sense for anyone, whether you have lupus or not. In addition, because you're dealing with a disease involving your immune system makes it even more important to be careful. However, this does not necessarily mean that you can't date someone with a chronic contagious condition. Determine what it is and discuss it with your doctor if you have specific questions. And if they think they'll kill you by kissing you ... hmmm, must be some kisser!
Moderator
Sometimes when I am with other people, I feel angry and frustrated that because of my lupus, I can no longer share in activities that they all take for granted. I know it is not their fault, but I miss the activities I once enjoyed. How can I keep perspective? -- Williamston, MI
Dr. Phillips
The best way to answer this is with a little saying that I've been using for years: "You have to let go of what was, and what could have been ... in order to enjoy what is, and what still can be!"
Yes, there may be things that you can't do, even things that others take for granted but there are ALWAYS things that you can do. And true friends will be willing to share some of these activities with you as well. Keep reminding yourself that, yes, this is not their fault, or yours. Focus on what you CAN do, not on what you can't.
Moderator
Any final thoughts, Dr. Phillips?
Dr. Phillips
Before we close, I'd like to say one more thing ... for anyone participating in this chat who is living with lupus, ALWAYS believe in yourself and know you're doing the best you can. It's always my pleasure to know and speak with so many of you, who have accomplished so much. Be proud of yourself ... always!
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Robert Phillips for joining us.
Please join us Wednesday, November 14 at 3 p.m. EDT for our guest Dr. Ronenn Roubenoff, Sr. Director, Immunology Medical Research, Biogen Idec, Inc.. Dr. Roubenoff will discuss aging and lupus.
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