Lupus Expert, Dr. Joan Merrill joined me recently to discuss the typical symptoms patients experience with the disease, how patients can be more vocal with their doctors about their symptoms and how family and friends can be supportive towards loved ones with this chronic condition.
Candace Rose: What is systemic lupus?
Dr. Joan Merrill: "Lupus is a disorder of the immune system. Our immune systems are there to protect us from outside invaders, viruses and bacteria and bad things in the food that we eat. But in lupus the immune system's gotten imbalanced and it ends up causing inflammation in various organs of the body. The commonest things that you see are arthritis in the joints or skin rashes that can be quite severe at times, but sometimes patients just get fevers and achiness, fatigue, loss of appetite and then almost any organ in the body can be damaged by this- the heart, the lungs, the kidneys, the brain. It's mostly seen in women of childbearing age, although men can also develop lupus; and so can children. So it's very unpredictable, it can be very hard to diagnose because as you can imagine from what I just told you it can mimic many other diseases, and it's very hard to manage, it requires an expert rheumatologist."
Candace Rose: Can you tell us about the National Burden of Lupus survey that was released?
Dr. Joan Merrill: "Yes, well this was a survey that wanted to put a face on lupus, and really understand what's going on with the patient. But actually the results caused a greater concern than just understanding people better, it turns out that most lupus patients reported that they are minimizing their symptoms- both to their families and friends, and to their doctors. What this can mean is that they may not be getting optimal treatment and over time that can lead to disability or even death."
Candace Rose: Why do you think that those surveyed were minimizing their symptoms when talking to their doctor?
Dr. Joan Merrill: "Well, of course I don't know but I'm guessing that it's sort of human nature to not want to be a complainer and remember these are young people, usually and they want to live their lives, they want to have fun, they want to be normal and they don't want to be complainers. They don't want to be a burden to their family; they may even be worried that they'll hurt their relationships if they complain too much, and somehow that's carrying over into the doctors offices as well."
Candace Rose: What advice do you have for those looking to talk to their doctors about symptoms they're experiencing?
Dr. Joan Merrill: "Well, I think this is a three-way problem so I can give advice to patients, I can give advice to doctors and I can give advice to families; and I think I'll start with the doctors, so I can give myself some advice. That advice is that doctors need to listen more, I know sometimes I'm in a busy clinic and people are pulling on my arm and telling me I'm backed up- too many patients waiting and they're all getting mad, I'm getting phone calls and I'm getting emergencies. I can walk out of a room kind of suspecting that we haven't completed the conversation. I need to be more sensitive to that because it could really lead to long term damage down the road. Similarly the survey showed that people at home who don't always have such close relationships with the doctors- patients sort of in between these two sets of people, they're not so convinced that the patients are really communicating effectively with the doctors. In fact they seem to be less convinced than the patients are. Similarly, the doctors are not so convinced that the people at home are giving full support. So we've got this huge breakdown, this three-way kind of triangulation of people that are involved in the well-being of this lupus patient, and I think we need to cross over those barriers and get this thing going.
From the patients point of view, they need to know that it's not a burden to a doctor to be told all your symptoms because that's what the doctor is there for. We get paid to do this and beyond that we're going to feel better if we're going to render optimal care and we're going to be confident that we're doing that. From the point of your family, I think the same thing is true- if you don't tell your family what's going on, there's an unease because there's much left unsaid. I think that if you can level with your family, but somehow do it in a way that they can feel that they can be helpful to you, then they're going to like that and that's going to be good for the relationship not bad. You're not a whiner, you're a person who is trying to come to a solution and you're asking for help and you're thanking people for it.
From the point of view of the family, I think they need to kind of understand that we go through our daily lives and we don't always tell people why they're valuable to us. And it may be that people with a chronic disease really need to hear all the ways they're valuable irregardless of that disease, and that might make them more able to kind of be a little more negative and say what's really going on."
Candace Rose: How is lupus typically treated?
Dr. Joan Merrill: "Well, there are many treatments for lupus, there's been an evolution over the last 50 years, in fact. At this point it's all kind of individualized, so it depends from patient to patient how you would approach the treatment. Again, this survey is really talking about a very important aspect of treatment which is the communication issues. It's throwing to light an awful lot of other things as well- for example men with lupus are often kind of not thought about very much because 9 out of 10 lupus patients are women. But men can have serious lupus, and it turns out the survey suggests they have a lot more problems with their marriages. Twice as many men as women seem to end marriages or their significant relationships because of lupus and they also seem to be filling out answers to questions about self esteem, showing that they're getting a big impact on their self esteem from the disease more than women."
Lupus Foundation of America. Lupus.org
Us In Lupus – UsInLupus.com
Candace Rose: Do you have any additional information you'd like to share?
Dr. Joan Merrill: "There's a website UsInLupus.com that people can go to. Patients can actually download something called the lupus impact tracker and it can help them kind of organize their symptoms and maybe make more efficient use of the limited time that they might have in a doctors office to communicate. But also, there's lots of information about all the aspects of lupus; plus there's a website Lupus.org from the Lupus Foundation of America, which provides many services."