This is Episode Twelve of “Autoimmune Disease: Pieces of the Picture.” Delesha Miller Carpenter, PhD, MSPH describes strategies for coping with autoimmune disease, including specific behaviors patients can engage in to help cope with their disease, as well as the role of caregivers and support groups, and other topics to help those affected by an autoimmune disease. Dr. Carpenter is an Assistant Professor in the UNC Eshelman School of Pharmacy in the Division of Pharmaceutical Outcomes and Policy.
“It’s really important to keep lines of communication open with your spouse or your caregiver or loved ones about what your needs are. Remember that if you don’t express what your needs are, and perhaps you overdo it—you go mow the lawn or you sweep the floor and you end up becoming more fatigued, that can end up being more of a drain on family members than if you were just to ask for help in the first place.”
– Delesha Miller Carpenter, PhD, MSPH
Ron Falk, MD: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our series that explores topics related to autoimmune disease, to help patients and their loved ones understand and manage their condition. Today’s episode focuses on coping strategies for any person who has an autoimmune disease.
We welcome Dr. Delesha Carpenter who is an Assistant Professor in the UNC Eshelman School of Pharmacy in the Division of Pharmaceutical Outcomes and Policy. Delesha and I have done all sorts of studies together in the past and she really is a wonderful expert in the whole question of how best to encourage caregivers and friends and patients to cope with their disease. Welcome, Delesha.
Delesha Carpenter, PhD, MSPH: Thank you, Dr. Falk.
Specific self-management strategies
Falk: People who have an autoimmune disease must learn to live with their condition. There are periods of time when they feel great and periods of time when they feel crudgy; periods of time where they’re on therapy, periods of time they’re off therapy. Really, there are a number of potential coping strategies. What advice in general do you give?
Carpenter: Well, there are a number of behaviors that patients can engage in to help cope with their disease. These are collectively referred to as self-management strategies. In the area of autoimmune disease, what’s been shown and studied to help patients cope with their illness are engaging in eight specific types of behaviors.
These are related to keeping your medical appointments, to monitoring your symptoms and side effects from your medications and reporting those to doctors if you have issues, proper diet, engaging in exercise to the extent that you can, avoiding infections, and taking your medications as prescribed, so engaging in all of those behaviors can help people manage their disease in different times, especially when they’re experiencing an exacerbation.
Falk: Wow – that sounds like a lot of work. So let’s take these one at a time.
Falk: Keeping appointments—that can be hard though, if you don’t feel well, you could say “Boy it’s hard for me to get to my appointment,” and if you feel very well, you may say, “Why should I bother going? I feel great.”
Carpenter: Well, it’s really important to check in with your physician regularly to make sure you’re on track with an autoimmune condition, because they monitor things when you’re feeling well and also when you’re not feeling well. If you have issues keeping appointments, there are appointment-reminding apps available to help you remember if you have issues forgetting—but it is really important to check in, even when you’re not feeling well.
Falk: I think it’s also an important point to check in when you’re feeling well. As a physician, it’s nice to see people when they feel well, because when they feel slightly unwell there’s a point of comparison: “I have seen you when you’re well, and now I understand that you deviate from that sense of wellness.” Making sure you keep in contact in times of wellness and times of illness is important.
Carpenter: Right, and you can detect things earlier when they’re just starting to get a little deviation from normal, so you can catch things earlier and hopefully prevent exacerbations, so that’s another important component of keeping appointments.
Falk: Another part of that group of that list had to with medications, and there are several component parts of that. Let’s go through taking medications and how you remember to take them, especially if you have to take more than one a day.
Carpenter: A lot of people will set up a routine where they take their medications or have them somewhere where they can see them on a regular basis. That’s what we call a “cue to action.” If you have your medications where you can visibly see them, they’re by your toothpaste where you brush your teeth in the morning, or they’re by your breakfast cereal if you eat breakfast in the morning, those types of things can help you remember. If you’re on a more complex regimen, there’s apps available that can send you reminders every time that you take your medications, so if you have problems remembering, those are really great and they’re available for free. There’s lots of them available on Google Play and the App Store, so I’d encourage you to check those out if you’re having problems remembering.
Falk: What happens if you’re not facile with a smart phone and you can’t have an app? What other sort of strategies can you use to take your meds?
Carpenter: There are pill boxes available that have the days of the week on them, Monday through Sunday, so you can set up your pill regimen that way. You can have a calendar where you check off the different times that you take your medications, so it’s definitely something you can do with pen and paper.
Falk: Those pill boxes are really pretty helpful, because you can lay out a week’s worth of medicines or a loved one can lay out a week’s worth of medicines as well. You know then if you’ve missed one or two or three doses, which may not be great.
Carpenter: Right, and it’s important to document when you miss doses too.
Falk: So keeping appointments, taking medicine, let’s talk a little about exercise. Exercise is important for general well-being. What advice do you give to folks who may not be feeling great with respect to how much exercise they should have?
Carpenter: I think to set small, achievable goals in relation to exercise. My mother has multiple sclerosis and she becomes fatigued very easily, so we set small, achievable goals like, “Go ahead and lift your legs for a minute each day. See what you can do. Move your arms around as much as possible in a given day.” When you’re feeling fatigued and you don’t have the energy, the tendency is to do nothing, but it’s still important to keep your muscles moving. Anything that you can do—if you’re feeling better you can set five minute intervals, and if you’re able to build up your resiliency for exercise you can go ahead and keep increasing those over time. If you set goals for yourself like, “I’m going to run a marathon,” or “I’m going to exercise for an hour,” and you don’t achieve those, then you might end up feeling bad about not achieving your goal, whereas just a little bit of exercise can help.
Falk: I’ve suggested to patients, for example, that if they’re walking, to purposely walk two and a half minutes one direction and come back, two and a half minutes back, and try to do that every day until they feel comfortable, and then to increase the time to five minutes out one direction and five minutes back. Then move up so that eventually over the course of time, people are walking 20-25 minutes one direction and back. Every time I suggest that to folks, they tell me, “Oh, I’m sure I could do that.” But every day just a little bit at a time with very tiny increments of how much work somebody’s doing turns out to be a really useful strategy.
Carpenter: It is, and there are ways to build it into your day so if you’re going to go grocery shopping, or go the bank, or have to run an errand, you can park a little farther away from the closest space and you can use that to build exercise into your day too.
Falk: How do you counsel somebody who is really feeling crudgy to incorporate exercise into a day when just everything doesn’t feel well?
Carpenter: Well, I think it’s okay if you’re having an absolutely horrible day to take a day off, to give yourself that break. Also, a lot of people will say that they feel better, even if they were feeling worse, they feel better after moving around for a little bit. So, it’s worth trying even if you’re having an absolutely horrible day just to move around a little bit, get the fluids moving in your body, get the muscles moving and see if that does make you feel a little better.
Falk: It’s interesting – patients can tell you that they feel incredibly tired. It’s impossible to exercise through that, and one needs to just lie down and take a nap.
Falk: So, we’ve talked a little bit about keeping appointments, taking medicines, exercise, what other thoughts do you have about adjusting activities?
Carpenter: So that’s really important to listen to your body when you have an autoimmune condition and understand when you’re doing through periods of fatigue and if you’re starting to feel ill, to go ahead and back off a little bit and give yourself a little rest. I think it’s also really important for your provider to documents the symptoms that you’re having. So documenting those on a calendar, keeping track of them, because you may notice patterns of when you’re experiencing symptoms, you can take down small notes on what you were exposed to or what you were doing that day, and you may be able to figure out, “Oh this is something that seems to be triggering some of my fatigue,” and then you can avoid that behavior in the future, or that situation.
Falk: Writing down what you’re feeling on a regular basis is very important, and then to bring that diary in, especially if you have figured out a pattern, there’s no question about it. Sometimes one forgets there are periods of time when one feels well. And there are periods of time when one feels well and can’t remember the last time they were ill, so that’s all important to say, “Hey, I felt great this month. Next month I might not, but right now I feel great.”
Many times patients don’t think that some symptoms they’re having have anything to do with their autoimmune disease, but they really may be, so it’s important to have a list or a diary of all those kinds of symptoms that one has.
Caregivers and support groups
Falk: Let’s turn our attention to social support, and you’ve done a lot of research on this issue. The role of caregiver, the role of friends, the role of spouses and loved ones—what have you learned?
Carpenter: There’s a lot! I’ve learned a lot in this, and think it’s a really important and timely topic, especially with aging populations and more and more people being in caregiver and patient roles. For patients, a lot of times they’ll report that they feel like a burden when they ask for help. What we found when we talked to caregivers, is that caregivers actually derive a lot of positive benefit from helping patients—they feel good psychologically, it makes them feel worthwhile that they’re helping someone, and that it actually stresses caregivers out more when the patient won’t ask for help when they need it. It’s really important to keep lines of communication open with your spouse or your caregiver or loved ones about what your needs are. Remember that if you don’t express what your needs are, and perhaps you overdo it—you go mow the lawn or you sweep the floor, or vacuum and you end up becoming more fatigued, that can end up being more of a drain on family members than if you were just to ask for help in the first place.
Falk: People want to help.
Carpenter: They do.
Falk: They just don’t know how to do it. There is the worry from the patient’s perspective of overburdening the loved one or caregiver, that one is asking too much. What do you tell the patient with respect to that?
Carpenter: It’s really important to have a frank conversation with the caregiver and set up what the boundaries are, so what is too much for a particular caregiver? It varies from person to person, so finding out what those are, and if you have a social support network with additional friends and family, neighbors who are willing to help out, you can distribute those tasks that are too much for one caregiver, and have them taken care of.
Falk: There is caregiver burnout.
Carpenter: There is. Up to 50% of caregivers will say that they don’t have enough time for themselves, and the problem with that, is if the caregiver doesn’t take care of themselves, then their own health becomes compromised, and when their health becomes compromised, they can’t help the patient. So it’s really important that caregivers take time for themselves every day, even if it’s just five minutes to take a mental break, especially when it’s during a period of intense exacerbation when there’s a lot going on—it’s important to take some time to take care of themselves.
Falk: It’s a marathon, not a sprint. It’s not a disease that’s going to evaporate in a few days, it’s going to come and go for a period of time.
Carpenter: Sometimes patients and caregivers don’t have a social network that they can draw upon to help them with certain tasks, so there is a web site available called eldercare.gov. That is a place where you can find out about respite services. Respite services are developed specifically for caregivers for caregiver burnout. So someone can come in, take care of the patient for a couple of days, maybe up to a week, to give the caregiver a much-needed break. These services can be found through a social worker, through the web site, through patient care organizations, so if you are one of those caregivers and don’t social support to draw upon to help you with things, it’s good to know that these are available, and can be covered through insurance.
Falk: Caregiver support is just as important as support of the patient.
I have always had the impression that spouses or significant others have an extra burden. There are feelings of the burden of frustration, of guilt on both sides—the patient and the loved one, sometimes anger—“When we got married I didn’t account for this potentially occurring, that I didn’t think I would get an autoimmune disease.” How do you help that pair of the patient and the loved one—the spouse, deal with those emotions, which sometimes are right under the surface?
Carpenter: I think it’s important for them to recognize that those feelings are normal, and that every couple that’s experiencing this situation where one person has an autoimmune disease and the other doesn’t, anger, depression, sadness, guilt—they’re all normal. One of the easiest ways to accept that is to join a support group. There are caregiver support groups and patient support groups. A lot of people express that it’s really beneficial to talk with others to realize that they’re not alone in these feelings and that they’re normal.
If it’s something that is more intense and it’s wearing down the relationship, in that case, then counseling is often recommended to meet with a professional counselor. There are counselors who specialize in chronic diseases and helping couples cope through that and being able to communicate more effectively in those situations.
Falk: I can tell you as a male, a lot of times males often have a much harder time with this conversation than do females. Our defenses are different, so it’s important to make sure that the male part of the relationship understands that they need to have these kinds of conversations.
Carpenter: Right. It can be tied up in gender roles, so if you have a male patient who’s feeling like he’s not providing for his family or feels like a disappointment, then that gets caught up in the conversations as well. That’s where it’s also important to find other male patients and understand that the way that you’re feeling is completely normal and that there are healthy ways to deal with it, and to learn from couples who are further along with how they cope with it and how they prevent it from negatively affecting the relationship.
Using mobile technology to help manage disease
Falk: You’ve done a lot of work on studying mobile technologies, and the use of these technologies to help patients manage disease. What have you learned there?
Carpenter: Well, there’s a lot of stuff on the market, and not all of the stuff is great. What’s hard for patients and caregivers is to sift through all these different resources and identify which ones are actually valuable for them. One of the good ways to navigate that situation is to look at user reviews and look at how many times it’s been downloaded, and you can see what their experiences were with a particular app. There are apps for everything—medication reminders, appointment reminders, calendars where you can document symptoms, there are web sites available where patients can set up the help that they need on a calendar where people can sign up for different tasks, so there is a lot of great stuff out there. Again, looking at user reviews is a way to identify which ones might work for you. It’s also a good idea to download a couple, play with them, and see what works for your particular situation.
Adolescents & learning to manage chronic illness
Falk: You’ve also done research on the whole question of how do young people manage chronic illness, and specifically adolescents and how they come to deal with not just growing up but growing up with a chronic disease. What advice do you have there?
Carpenter: Adolescence is a really important time where individuals are taking on their own identity. Adolescents with chronic disease have an additional burden to take on with negotiating how they’re different from their peers with a chronic disease, also navigating with their parents who’s going to do what when it comes to disease management.
So you really want adolescents to be in charge of their disease by the time they leave home, so that when they go out on their own they are able to manage their chronic illness on their own. It’s important for parents to seed responsibility for disease management tasks starting early on and to build up that responsibility as the adolescent ages. It can be difficult for parents and adolescents to have conversations about who does what, but it’s really important. If the adolescent feels like they’re able to take on more duties related to their illness, remembering to take medications, they need to be comfortable talking with their parents about it.
Adolescents also could be uncomfortable talking with their provider about their illness, especially when their parent is in the room. Some of the work that we’ve seen, is parents tend to dominate the conversation with their providers, but it’s really important that adolescents learn how to communicate with their providers about their illness and be able to ask the questions that they have about their disease. Those are some of the key things that we’ve learned over the years.
Falk: What advice do you have to the parent so that the parent diminishes their parental-innate drive to take care of their young loved one but at the same time not be so overbearing that they’re interfering with care?
Carpenter: It’s important for the parent to realize that they want an independent fully-functional child by the time they leave the home, so it’s important to seed that responsibility. At the doctor’s visit, it can be natural to answer when the provider’s asking questions. A lot of times if the adolescent doesn’t answer right away, then the parent will jump in right away knowing the answer and say, “This is what happens.” But you have to kind of fight that instinct. If it’s really difficult, you might need to leave the room, and say, “I’m going to let my son or daughter answer these questions. If you need me, I’ll be right outside.” That fosters the independence that you want your child to have by the time they leave home, so that you know they’re capable and competent in managing their illness.
At home, checking in on medications—a lot of adolescents will consider that nagging.
If you ask every day, “Did you take your medication?” “That’s nagging! Don’t you trust me to take my medication?” Your heart is definitely in the right place for wanting to check in, and you are right to check to make sure your adolescent is managing their medications appropriately, but again you can set up things like apps and things like that where you can be notified if your child misses their medication and only check in at those times. So there’s definitely tools to help with that.
Taking care of your mental health
Falk: What other suggestions do you have for patients or their caregivers who are listening to this podcast?
Carpenter: Another suggestion I have is to really take care of your mental health. People when they’re diagnosed with chronic illnesses, at high rates, end up experiencing depression or sadness, and to be aware of that and to be able to talk to your provider about that, because there’s treatment available. It doesn’t have to be medications, but there are things you can do to take care of your mental health when you have a chronic disease. So, to not feel afraid to talk to your provider if you are feeling sad.
Falk: That is an incredibly important recommendation, because I think everybody who has an autoimmune disease at some level at some point in time gets sad about, “Why is this happening to me?” What are the best coping strategies, and a lot of times it has nothing to do with medication. The things you started talking about—healthy living, eating right, eating a well-balanced diet, eating and exercising just become unbelievably important. We actually have problems with patients who become sad and stop exercising and stop eating and that makes everything worse. Encouraging that conversation becomes incredibly important.
Carpenter: Yes, and don’t become stigmatized and feel bad if you’re feeling sad. It’s completely normal, it just comes with having a chronic illness—you’re going to go through periods of time where you experience sadness, and your provider is there to help you in those situations.
Conversations with employers about your disease
Falk: What advice do you have for patients who are working? How should they interact with their employers with respect to: “I don’t feel well today, I really can’t come to work.” And the employer thinking, “Oh no, this employee is not capable of doing their job.” There is this tension of wanting to be able to do one’s job, but at the same time being able to take care of oneself as a patient. That’s a funny dynamic. What suggestions do you have?
Carpenter: Yes, that is an interesting dynamic. I think the general public lacks awareness of what an autoimmune condition is, what exacerbations are, how severe the fatigue can be that it can interfere with your ability to do your job. I think that when you receive a diagnosis, it’s important to sit down with your employer and have a frank conversation of, “This is what I’ve been diagnosed with.” I think the onus for educating the employer is on the patient. Maybe bringing in some material—“These are some of the things I may be experiencing. How do we handle this?” Be proactive with it: “Should I start experiencing an exacerbation or extreme fatigue, how should we go about dealing with this?”
Falk: The patient gets worried that they’re not going to be promoted, that they’re not going to be considered in the same way in their job. Those should also be sort of frank conversations.
Carpenter: Right. You know it’s not legal to discriminate based on your medical situation in jobs, and it’s important to be aware of that. So if your employer does become combative, it’s important they realize there’s legal action that can be taken.
Falk: Again, it’s an open conversation with the patient and you’re absolutely right that it’s important for the patient to educate the employer as to what’s going on and what the disease is all about.
Carpenter: Right, because they won’t know unless they have someone with an autoimmune condition in their own family. Employer reactions could vary significant depending on how aware they are of those conditions.
Falk: Thank you, Lesha. And thanks to our listeners for tuning in. If you have enjoyed this series, you can subscribe to the Chair’s Corner on iTunes or like the UNC Department of Medicine on FaceBook. Finally, we’d like to hear from you about what topics you’d like us to explore in the future. Please leave us a comment on iTunes or on FaceBook. Thank you so much.
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