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Host 0:08
Welcome to The Expert Series brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts in lupus to discuss topics to help you live better.

Today's guest is Dr. Christie Bartels. Dr. Christie Bartels is the division chief of Rheumatology at the University of Wisconsin School of Medicine and Public Health and chair of the American College of Rheumatology RISE Registry Health IT committee. As a rheumatologist health services and implementation researcher, Bartels' work aims to improve cardiovascular health and reduce disparities among patients with lupus and rheumatic diseases. Her research is cited in the US cholesterol guidelines and has led to nearly 100 peer-reviewed publications. Dr. Bartels received funding from the NIH NIAMS. NIMHD, the Rheumatology Research Foundation, and others. Thank you so much for joining us today, Dr. Bartels.

Dr. Bartels  1:09  
Thank you so much, Alyssa. And it's really been my pleasure working with LFA over the years, and I love this series. Thank you.

Host 1:16
Awesome, thank you so much. So the first question here is, what is stress? And what are the signs of stress?

Dr. Bartels 1:25
This is great. So you know, if we think about it, I was really kind of pointing out that there are actually a couple of different types of stress that we can have good stress and bad stress. So we talked about, you know, distress, sort of when things are not so terrific, which could be physical things like surgeries or illnesses, bacterial or viral illnesses, or, you know, life stressors, things like a job change, a family change, a health condition, sort of re-acclamation or financial stressors, those are sort of the stresses. But also, you know, there were some really good 'you' stresses, and that's 'you' stress. And those use stresses are things like you taking on a new job, maybe welcoming a new family, a baby into your family or a new family member, if you adopt, a new marriage, you know, sending a kid off to school, all those things. And I think we need to sort of remember that it's the sum total of all of those changes, that it can really impact health and well-being that even lots of new positive changes can really again, take a little bit of an energy zap. And so sometimes it's good for us to think about those common signs of stress. Sometimes it's it can be physical science, people getting headaches, or neck pain, can get fatigued, or just feeling kind of revved up, and we're all exhausted. And I think just tuning into those body cues to then maybe take inventory of some basic advice sleeping enough, am I getting a bit of exercise? And am I just giving myself some breathing space? I'm in the middle of good stresses or negative stresses and or am I getting the help I need? Those would be kind of some things to really clue in on early when thinking about stress.

Host 3:02
Great. And then how does stress affect people with lupus, specifically their physical impacts and impacts on self-management.

Dr. Bartels 3:13
So often people living with lupus know that they have sort of a narrow margin, and I kind of talked about this, that, you know, sometimes their margin is very thin that you know, to get nine hours of sleep per night, in order to sort of just function. So if they have a couple nights where you know, they've got stressors and they're not sleeping well, it can tip them into just feeling poorly or be even to flare if it continues over the long term. So the physical impact can really add up quickly. And folks who have lupus because they as I mentioned, I kind of just think about the sort of the margin or margin is really narrow sometimes. And I'd say I've seen the I think on the Elevate website, there's actually even the spoons theory that some people find helpful and talking to their family things like this, they just don't, you know, if they've got so many spoons for the day. So the stress bank account can sometimes get zapped out pretty quickly. And so the things that can really make a difference on that physical impact would be you know that sleep can make a huge difference. And we know that sleep deprivation can make a difference there. The second piece is to give themselves some margin after they've had it, you know, a virus or a cold, or you tried to avoid that in the first place with good masking as we add good vaccine habits as we're heading into the cold or flu season. So that we don't sort of tip into that zone of kind of that recovery stress. And then, you know, thinking about self-management, I think there are some great things like lupus tracking, including the self-application on the LFA website, but basically a lot of times people with lupus know themselves the best. They know they need, you know, nine or 10 hours of sleep at night. They know that they need to do a tiny bit of walking during the week or a little bit of physical activity that's not too strenuous. And they, you know, know that they need some friend contact or some kind of meaningful contact and social contact in their life. And I think kind of zeroing in on those things that help them feel well and maintain that state of wellness can also help correct when we feel ourselves kind of tipping into that stress zone. So I would really kind of encourage people with lupus to zero in on what they need, and/or talk to their doctors and their team about how they can identify those early symptoms of being stressed and how they can zero into those skills to get tip the scales back into the healthy zone.

Host  5:28  
Awesome. And I know that you mentioned that people who have lupus probably need at least nine or 10 hours of sleep and you know, maintain contact with other people. In terms of socialization. How can someone create a healthy routine to address day-to-day challenges?

Dr. Bartels  5:47  
I love that. So you know, the American Society of Sleep Medicine says that all healthy adults need at least eight hours of sleep and I need something I recite weekly to patients that even healthy people need eight hours of sleep a night. It's not it's not indulgent to just get good sleep. And then people who are living with chronic illness often need more I often hear patients with lupus tell me that, yeah, they need the nine to 10 hours. And I just tell them, you know, tell them your doctor told you you need this, right? Like when you're explaining to your family or whatever, it's not indulgent; it's necessary to stay well. So that's the first piece on the sleep piece. And then you had a second part of your question that I thought was fantastic there too. Can you Alyssa, can you frame that again?

Host  6:22  
Yes. In terms of dressing day-to-day challenges, you know, how can they tackle that? How can they go about it in a healthy way?

Dr. Bartels  6:36  
I love that. So Alyssa, you know, a couple of things come to mind. So one would just be as far as sort of building stress resilience and things that can again build up that that stress bank account, you mentioned, you know, a couple of things that I always tell people have seen a good sleep, good exercise, and then kind of some meaningful life engagement are some of the three things I think are incredibly important. The Surgeon General's actually kind of pointing out the loneliness epidemic, actually, in the United States that really got worse with the pandemic. And I think particularly for people with chronic illness, that was an additional burden. But I would say one of the things that I often will tell people too, is, you know, invite a friend to go on a walk with you, and you get a twofer, you get a little bit of exercise, and you also get a little socialization. And if you walk out the door, while it's still nice out, you also minimize sort of that the germ factor here too, so. So you know, that's a good habit that I kind of point out that you know, and particularly if you have a friend who's going to meet you someplace, it might also be a little bit of an accountability habit, which often works for me. And then you can get the added benefit of a little bit of socialization. And that, likewise, you can do classes at the YMCA or other places that are pretty low-cost classes, you could do a water aerobics class, and again, get a little bit of socialization and a little bit of exercise, if you've got the luxury of time to do that, and or facilities to do that. But again, your doctor can write a prescription for things like water therapy with a physical therapist as an entry point for that. And those can be really, really fantastic things to help with that I strongly underscore sort of, you know, the basics, the sleep is a good thing, the exercise in finding something that sort of starts low and go slow, we kind of tell people to increase by about 10% per week. So don't overdo but just sort of gradually do a bit. And if you're having a good day you do some exercise. If you're having a bad day, you do just a little bit, maybe half as much. But you do a little some physical activity every day that gets your endorphins going those good brain chemicals to keep your energy up and to keep it sounds paradoxical. But there's great data showing that walking programs can improve lupus, physical well-being and decreased fatigue, and there's very little that I can do to decrease fatigue. But walking is one of those things. That's a great thing that I think doesn't get its due. So that's one thing I really strongly encourage people to take a look at, too. Alyssa, I'd be curious to you. You've also talked to people over the years. What else do you hear from patients as far as sort of just building in a stress bank account or wellness account? What do you hear as being effective?

Host  9:02  
Actually, I mostly speak with doctors. Unfortunately, I don't have the access to talk to patients, to talk to people with lupus about how they feeling. But I have heard doctors essentially mention what would you have talked about: kind of having a gauge factor and being able to say 'no' sometimes and that is one of the healthiest ways that people can, even other people who don't have lupus, just kind of having a healthy way to gauge yourself and how you're feeling and being in tune with yourself. 

Dr. Bartels  9:43  
Yeah, I love that: the healthy no factor I think is another great way to sort of stay in that in that wellness someone and not over-commit. Or even if you have a hard time saying 'no' I think sometimes to even saying, "Can I get back to you on that?" and then just taking a little bit of a minute to collect yourself and so do I really have time and energy for this? I think that's great. Yeah, giving ourselves some grace. I think that's a great piece of advice as well. I'd love that.

Host  10:07  
So one of the questions I have here is, how can someone know what they're experiencing is? Is it related to stress? Or is it lupus?

Dr. Bartels  10:17  
I think that's a great question. You know, again, when particularly fatigue can be a tricky one, right, that we can have, for any number of reasons. And the question is, am I in flare? Or is life just kind of taking a little bit of a toll this week? So I would say, you know, a couple of things that can be really helpful. One is basically, if you think you might be tipping, just get good sleep for a couple of days and see how things go. Particularly if you're not having any majorly distressing symptoms, just get rested up and make sure you're taking your hydroxychloroquine regularly or your medicines regularly, and sort of take some stock of how things are going. I think that things did get that can help us know, whether you're having lupus would be the other piece would be, you know, are you having other lupus symptoms as well? Are you having mouth sores? Are you having sores, are you having fevers, then you should, you know, get in and get seen or get your lupus labs to see if you're flaring. Versus if you're just having a little bit of, you know, fatigue or difficulty sort of with day-to-day activities, you know, maybe start with getting some rest, taking some Tylenol, and then and then kind of reassessing in a day or two. But giving yourself margin, like we talked about, give yourself some grace to kind of rest a little bit. Often I tell people to that, you know, I've got patients who have FMLA paperwork on file that we've done for work, so that if they need a rest day, to not tip into full-blown flare, we can get them that rest day if they need it. And sometimes that makes a huge difference to all the difference in the world. So talk to your doctors about how you can do that. Or, you know, if you need to work from home schedule where you know, once or twice a week, you get to work from home day. Those are things you can navigate with your doc as well. And then the other piece I would actually have plugged the sooner too. But I think also folks who are engaged with either in-person or virtual support groups, sometimes you can talk with other people who have lupus too, to say, you know, is this just an everyday fatigue and sort of everyday chronic thing? Or does it sound like I'm tipping into a flare, sometimes talking with folks who also have lupus, obviously, talk to your doctor if you think you're in full flare, but if you just need some pure support, that's another great resource. And Alyssa, I've been loving the the peer support program that LFA has as well. So there'll be some ways to reach out in that in that zone, too.

Host  12:27  
Yes, we often talk about support groups for almost each state, different backgrounds. So we have a Hispanic/Latino support group, we have one for Black women. So there are ...

Dr. Bartels  12:43  
One for men.

Host  12:44  
Yeah, yeah. And for men, of course, you know, there are resources out there for people with lupus.

Dr. Bartels  12:50  
Alyssa, another great resource that the LFA has, I think, that I really, it's actually on the Lupus Initiative website, but they have one about talking to your family about having lupus too. That's good, too, for that boundary setting like you were just talking about that, again, just having those healthy conversations of the fact that my bank account gets tapped out pretty quickly on the energy zone, for instance, he could say, you know, as a person with lupus, and just explaining that to your family, so that they can give you some grace and understand you need some urgent so that I think those are great things to zero in on.

Host  13:20  
Kind of piggybacking off of, you know, talking to your doctors and getting them involved in your care and being able to help set the boundaries. But you know, when stress becomes too much, when is it time to seek professional help? And what help can they offer? And, you know, what, if these issues of stress are not addressed, you know, what, what kind of long-term issues are there?

Dr. Bartels  13:49  
So those are three really great questions. And I'd say the first piece would just be you know, talk with your rheumatologist and are your primary care doc about you know, do we need to sort of look into the flare zone and just make sure we've got your lupus while managed, we know that the complements are the double-stranded DNA will go up the complements will go down in the, in the time of active lupus. And so again, looking at those labs dynamically can make a difference, checking that urine to make sure you're not having kidney disease. So one is just obviously first just make sure that your disease is as well controlled. I sometimes also just remind people too, that when you're fatigued, you're feeling really crummy. One autoimmune disease sometimes can overlap with other autoimmune diseases, and the most common one is actually thyroid disease. So you can have them also just check your TSH, and make sure that you're not having low energy because you've got a thyroid problem. But the other pieces do, you know, we talked about all those sorts of stresses, good stresses, bad stresses, all of those things. So certainly also if you're having difficulty you can't fall asleep because you're anxious and worried or you're waking up early because you're anxious and worried or it's causing some impairment with concentration at work, things like this. You know, there are folks who are health psychologists that can be incredibly helpful and you can get a referral from your doctor to see one of those. I also often use low doses of antidepressants to help with sleep at bedtime, there's some old-school low-key ones. And there's actually some of those too, that can help you with chronic pain. So we can sometimes get a twofer with some of those medicines and sometimes your rheumatologist, I don't mind prescribing those, but sometimes your intelligence will prescribe those and sometimes primary care will prescribe those if you need them, but otherwise, a referral to a therapist, to a health psychologist, all those things can be incredibly helpful. And the final thing I would just like point like to point out too, is that I think we're getting smarter about things like social determinants of health. But I think we historically have thought about talking about money as a bit taboo, but it's not taboo. So if you are stressed, because you've got financial stressors, tell your team because they can reach out to medication assistance programs, they can reach out to social work to get renter assistance, utility assistance. I actually recently learned a service we have here to help people that get evicted have renter's security. So there's a lot of things that resources that we can activate, we're trying to do a better job of partnering again, so that we don't burden patients who are already burdened with illness, with these financial stressors as well. So I would say, you know, ask for help. I know that can be really hard to do, but, but there are, there are some resources that we can help activate. So trust us to partner with you to get the right people to help you grow. Because it's a lot to it's, it's a lot sometimes to carry alone.

Host  16:25  
Yeah, yeah, for sure. And I know that our health education team, they often get inquiries about getting assistance, no matter what that is. We point them to our financial assistance page, Prescription Assistance Programs, that kind of thing. So I'm really glad that glad that you mentioned that. And then lastly, kind of piggyback off of getting help, what are some stress management apps people can try to to reduce stress?

Dr. Bartels  16:58  
I love it. So you know, I think there are a number of different ones. We mentioned earlier, the SELF app from the LFA. And I think that is a fantastic app, because it just lets you track your own symptoms, and it'll help you kind of figure out when you're in the good zone, what's going right, and zero in on that, I think that can be incredibly helpful, but also sort of when you tip sort of what what what's changed in those zones, too. So I think that SELF app is a great one, I would recommend, you know, in the in the realm of exercise, I do realize that for some you know, I don't want to that's also a luxury for some people, right, you might not have access, easy access to a warm water pool or things like this. But one of the easy, free resources that's out there is the Arthritis Foundation website has some information on arthritis for yoga. So basically things that are low stress on hands and wrists for people. And things that you can do at home, that are exercises, they also have a Walk With Ease program that will gradually get you increasing. And you can do that either as a group by finding a walk with these walking programs in your area, or you can do it at home with just those online resources. So I would really encourage people to look at that if you want to start just a little bit of a to build your own stress bank account, get that exercise program going at home. Those are two free resources. And then finally, another one: you know, if you're having problems with anxiety, worry, you just need some help sleeping. One of the free apps that I really love is something called Insight Timer. And that's an app that you can just download for free and look up all sorts of different simple meditations. There'll be things like meditations for sleep, there'll be a walking meditation, if you want to take a look at that. There's lots of different pieces in there. There's self-compassion, and meditations, again, things you know, it's hard enough to live with with chronic illness, sometimes we can pile on to ourselves. And sometimes we just need coaching to get a little grace. And these things can be from two minutes to I think they're two minutes to 40 minutes. And so honestly, the beauty is you can pick for free, whatever menu of things might actually be helpful to kind of get you back tuned in to feeling a little bit better. So those are some things that I often recommend to patients and people around me.

Host  19:03  
Awesome. Thank you, Dr. Bartels, that was very insightful, I'm sure hopefully for our audience, but especially for me, just hearing ways to better manage stress. And these apps that you talked about, especially like the Insight Timer. Thank you Dr. Bartles for talking with us about stress and stress management. We appreciate your time and expertise. We invite those of you listening in to check out our past episodes of The Expert Series by visiting lupus.org/expertseries where you can also subscribe and get alerts when podcasts are released. If you have any lupus-related questions, please reach out to our 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. Thank you. Until next time.

• Episode 1: Managing and Preventing Flares
• Episode 2: Financing Your Medical Care
• Episode 3: Tips for Managing Medication Side Effects
• Episode 4: Diet and Lupus: Separating Fact and Fiction
• Episode 5: Lupus and Brain Fog
• Episode 6: Lupus and Men
• Episode 7: Complementary and Alternative Medicine
• Episode 8: Clinical Trials and Lupus
• Episode 9: Lupus 101
• Episode 10: Exercise and Lupus
• Episode 11: Lupus Lab Work and Blood Tests 

• Episode 1: Skin Lupus - Beyond the Butterfly Rash  
• Episode 2: Becoming a Self-Advocate
• Episode 3: Lupus and Heart Health
• Episode 4: Lupus and the Kidneys
• Episode 5: Preparing for a Doctor's Appointment
• Episode 6: Childhood Lupus and Mental Health
• Episode 7: Vaccine Safety and Lupus
• Episode 8: 5 Common Questions About Diagnosing Lupus
• Episode 9: Planning for Pregnancy with Lupus
• Episode 10: Lupus and Eye Health

• Episode 1: Lupus Foundation of America Health Educators and Resources
• Episode 2: Fatty Acids and Lupus
• Episode 3: Mental Health and Wellness During a Time of Uncertainty
• Episode 4: Telehealth and Lupus
• Episode 5: Reproductive Health and Lupus
• Episode 6: The Impact of Racial Trauma on Mental Health
• Episode 7: Kidney Health and Lupus
• Episode 8: The Importance of Support
• Episode 9: Trust and Participation in Research
• Episode 10: Advice from the Community

• Episode 1: Lupus and Physical Activity
• Episode 2: Top Questions about Skin and Hair
• Episode 3: Managing Your Journey with Lupus Nephritis
• Episode 4: Improving Health Visits for People with Lupus
• Episode 5: Could It Be Lupus?
• Episode 6: Men’s Health and Special Considerations with Lupus
• Episode 7: Making it Work with Lupus
• Episode 8: 2021 Lupus Treatment Research Updates
• Episode 9: Lupus Myths and Realities  (podcast in Spanish)
• Episode 10: Diet, Nutrition, and Kidney Health
• Episode 11: Caring for Caregivers
• Episode 12: Winter Wellness

• Episode 1: Medication Management
• Episode 2: The heart and lupus
• Episode 3: Recursos Financieros Para Personas Hispanas/Latinas con Lupus (Financial Resources for Hispanics/Latinos with lupus)
• Episode 4: Lupus and Antiphospholipid Syndrome (APS)
• Episode 5: Self-care & self-management for people with lupus
• Episode 6: Fertility and reproductive health
• Episode 7: Participating in Clinical Trials
• Episode 8: Lupus and the Eyes
• Episode 9: Respuestas de nuestra educadora de la salud
• Episode 10: Health Disparities and Social Determinants of Health

• Episode 1: Invisible symptoms of lupus
• Episode 2: Visible Symptoms of Lupus
• Episode 3: Lupus in the LGBTQ+ Communities
• Bonus Episode: The Awakening: When lupus looks like mental illness
• Episode 4: Lupus and Teens
• Episode 5: Stress and Stress Management
• Episode 6: Lupus and Cancer

• Episode 1: Lupus Nephritis
• Episode 2: Race-free eGFR Calculations and Implications for People Living With Lupus Nephritis