Providing Answers, Support and Hope in Alaska, Idaho, Montana, Oregon, Washington and Wyoming

Question 1

Answer

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Host 0:04
Welcome to The Expert Series brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts and lupus to discuss topics to help you live better. Thank you for tuning in to today's episode. My name is Alyssa and I'll be your host. I am very excited to welcome Dr. Cynthia Aranow, who will talk with us about invisible symptoms of lupus. Dr. Cynthia Aranow is a Professor of Medicine and Molecular science at the Feinstein Institute for Medical Research, Hofstra School of Medicine in New York as a rheumatologist and a Lupus expert. She has cared for hundreds of patients with this complex disease and believes that patients and their physicians must partner together in order for there to be significant progress. Dr. Aranow's research focuses on outcomes as well as both translational projects, which include studies of the pathogenesis and the neuropsychiatric lupus, and clinical trials of novel agents and approaches for the treatment of SLE. She is a member of national and international organization of lupus experts committed to increasing our understanding of lupus and to improve the lives of lupus patients.

Dr. Aranow 1:22
I really want to thank you and for the LFA for inviting me and giving me the opportunity to be part of this. I think it's really important. And I think it's crucial that people with lupus, you know, have the most and the best information available to them. So thank you for putting this together.

Host 1:52
Of course, and we're so happy to have you. So moving into the first question, we know that there are common signs and symptoms of lupus. But can you explain the difference between a sign and a symptom?

Dr. Aranow 2:07
So the difference between a sign and a symptom is important. And they're really often confused. So symptoms are the things that people with lupus experience, while a sign is something that's objective that may or may not be measured. Some things are both. So a patient may see a rash, tell their physician that they have a rash, the physician may then see the rash. So the rash is both a sign and symptom, joint swelling, hair loss, swollen lymph glands, what else mouth ulcers are all types of things, examples that are both signs and symptoms. But there are signs that aren't symptoms, lots of lab tests. So urine analysis may come back showing protein in the urine, but the patient feels fine. The protein is a sign but not a symptom. Other common things of lupus patients are white count may be low, and liver test may be high. The some of the antibodies may be high. These are signs but they're not symptoms that the patients don't feel anything. But as we know there are symptoms, there are invisible symptoms. So people with lupus often may have pain, or fatigue, they may be depressed or anxious. These are there, but they're invisible. They're real, felt by patients. But they're subjective and they're personal. They're things that can't be seen or directly measured by anyone else. So there is a difference between a sign and a symptom. And it's really important to remember that people with lupus may have invisible symptoms.

Host 4:20
Thank you for that explainer there. And you did mention you know that you know some symptoms that invisible symptoms can have a physical impact. Can they also have a mental impact? You know, someone might look fine, and you know, people might be skeptical and accuse people of being, you know, lazy or lying. Can you talk to us about that?

Dr. Aranow 4:44
So I'm glad you're asking about this as it's something that so many of my patients tell me about and you actually put use the phrase that people have told me is that you know, they look fine. Other pupils will say that they look fine. But these other folks may or may not believe that patients have told me that others have told them that they were lying. Or if they were fatigued, that you know that they're being lazy or just not trying hard enough. So that when you are or actually, if anyone is feeling something that no one else can see, and they either tell you about it directly, or you can sometimes sense that they that you're feeling something that they don't see that they don't believe you that you're not being understood. They're, they're not validating you. And this is really a problem. Because, you know, patients have been told me that they feel isolated, they feel alone, that no one else understands what they're going through. And, and actually, some have even told me that they begin to doubt themselves, but then they're feeling what they're feeling, and they know that it's there. So, I mean, it really can have a mental impact.

Host 6:18
Sounds extremely frustrating for those experiencing it. And now, you mentioned, you know, patients talking with you. What are some ways that people with lupus can effectively communicate their lupus symptoms to their doctors?

Dr. Aranow 6:35
So communication is a word and it goes both ways. It's really important that others know that there are these invisible symptoms, and are open to listening. And, you know, even doctors who should know that people with lupus have symptoms that can't be seen, they may become frustrated, and, in some cases, even tune out. And it's also really frustrating, because, you know, often these are things that are really, really difficult to treat.

So it's not that, you know, we can we that we have a magic bullet that we can give something to someone and cure their pain, you know, or, or do something about their fatigue. Many of these invisible symptoms are things that are outside the typical, I'm gonna say, clinical features of lupus, but they're there. So, you know, one of the things that I think may be helpful, and this is in some circumstances, if a Lupus patient reminds us that this symptom is invisible, and I've actually had more than one patient tell me that when people ask how they're doing, which is a sort of normal way of starting a conversation sometimes that they almost always start with something like, even though you can't see it, and you're tired, or I have pain, or you know, I'm anxious, or whatever that invisible symptom actually is. But sort of acknowledging to the other person that, hey, they have something the patient themselves have something that they are feeling. But, you know, sort of acknowledging sort of reminding the other person that, no, you can't see it, this is something that I am feeling, and that sometimes can help.

Host 8:56
All right. So how can caregivers, friends and family members, support people with lupus who are already experiencing these invisible symptoms?

Dr. Aranow 9:08
Wow, so another really hard question. But it's important. So I mean, I think it's crucial, you know, that caregivers and friends and family members, as you've just mentioned, that they're there for people with lupus, and that they're there to listen, to validate, and to try to understand that what that person with lupus is going through is incredibly important. And just because they can't see it doesn't mean that it doesn't exist. So you know, different lupus patients may actually need different types of support. So some may just need to be listened to, while others may need some types of physical help. So offering to help with shopping, or cleaning, or childcare, or whatever activities might be needed, may be really important for that person with lupus. I think, on the other hand, that the most important thing not to do not to like invalidate them and say, No, you aren't feeling what you're feeling, because I don't see it. And I think, you know, not doing that is incredibly important. You know, but unfortunately, it can still happen. And I think that gentle reminder, you know, by the person with lupus, that, you know, Hey, you can't see this, but it's there, and some things are invisible can be helpful and important.

Host 11:01
Thank you so much for that. And I guess, lastly, is there any kind of advice or anything you would depart for people with lupus, to help cope with their physical and their mental symptoms?

Dr. Aranow 11:18
So that's also hard. And probably the best advice is to communicate as best you can with your healthcare provider, so that they're aware of what's happening. It's also really important for you to be able to listen to your body, to take care of yourself, and not push yourself too much when you're feeling overwhelmed. I think it's also equally important to accept yourself, and to accept what you're feeling, not be frustrated by it, and not to set expectations too high, you're feeling this, you're not feeling 100%. And not to say, oh, you know, I should be feeling this, like that word should is always a bad word. So, also, I think it's important to remember that some patients do find that professionals, you know, be this religious leaders, therapists, sympathetic friends, that they may play important roles and may be able to offer help. But you know, each person is different. So this isn't an answer in which one size is going to fit all.

Host 12:49
Right, thank you so much Dr. Aranow for talking with us about the invisible symptoms of lupus and how to cope and manage, and we really appreciate your time and your expertise.

Dr. Aranow 13:04
Well, again, thank you for having this program. I think that this is something that is often not talked about as much. I think it's really frustrating. And I think that you know, bringing it out there so that people are aware is really important. So thank you.

Host 13:30
Of course! We invite those of you listening in to check out our past episodes of The Expert Series by visiting lupus.org/theexpertseries, where you can also subscribe to get alerts when podcasts are released. If you have any lupus-related questions, please reach out to the health education specialists by email at lupus.org/healtheducator or by phone at 1-800-558-0121. And we'd love to hear from you. If there's a topic you'd like to see covered., email us at info@lupus.org. Also, when you get the chance, please feel free to leave us a review or a comment on all available streaming platforms. Thank you and until next time.

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Providing Answers, Support and Hope in Alaska, Idaho, Montana, Oregon, Washington and Wyoming

The Expert Series: Invisible Symptoms of Lupus