The Expert Series: The importance of support

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The following transcript is automatically generated and may contain typos or misspellings. Please listen to the episode for the most accurate language.

Host 0:00
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.

Thank you for tuning into today's episode. My name is Alisha and I'll be your host. Today I am very excited to welcome two of my teammates, Lauren and Wendy, who will be sharing more about the importance of support during your lupus journey, whether that's as a person with lupus or as a caregiver. Wendy is based in our Southern California Regional Office and is the foundation's Community Outreach and Engagement Manager. She has been living with lupus for 20 years and has a master's in public health as well as experience in both leading and participating in support groups, advocating for lupus and creating lupus educational programs. Lauren is our health education nurse manager at the foundation, and she's a registered nurse and has a Master of Public Health. She and her team respond to both national and international lupus-related inquiries every single day, over the phone and online. Lauren also helps to support the development of resources and programs for those affected by lupus. Thank you both so much for joining us today.

Lauren 1:10
Thank you.

Wendy 1:12
Thank you so much for having us.

Host 1:15
So according to data released by the world lupus Federation in May 2019, more than six in 10 people living with lupus say that the disease has had a lot of effect on their emotional and mental well being. And about 1/3 of respondents to the same survey also indicated that the disease had at least some effect on their emotional status. So before we get into talking about the different types of support and things that might be helpful, can you both paint a picture of what someone who has been affected by lupus may be going through, possible areas where they may need support, and why support itself is so important? Wendy, I'll start with you first.

Wendy 1:55
Sure, thank you for that. So lupus can bring on a whole layer of emotions and kind of leave you just standing there wondering what's next. And so support is really important because people need to first of all learn, okay, what am I up against? A lot of times when we when we know that someone has lupus, we also know that they might not fully understand the disease, or the people that are going to be in their support system to help them may not be aware as well. So it's important to be involved in a in a support group to begin with, you know, just gathering the key tools that you'll need, learn more about the disease, so that you can make lifestyle changes or adjustments and navigate this whole new terrain.

Some of the areas that we can think about, when a person is diagnosed with lupus kind of are in four areas for me. Personally, you may need support, you might need emotional support, social support and physical support. And so that's kind of the approach you want to take when you consider supporting somebody with lupus, they are dealing with shock, they may be dealing with grief, anger, feeling overwhelmed, but above everything, they're not feeling well.

And so the other thing is when we think about the importance is the fact that they need to find resources and learn to work with the medical community. Because with lupus, a lot of times and in most cases I'll say, you have a team of specialists. So it's not just going to, you know, a primary care physician only and doing checkup. Depending on how lupus has manifested in your particular case, you might have a panel of of what I like to say ologists, you might be working with a nephrologist, a neurologist or cardiologist. So it's important to definitely navigate through that and also keep a record so that each doctor knows what the other one has done.

And then the last reason why support is so important--and this was something that meant a lot for me--is the fact that each person with lupus needs at least one friend with lupus, because there's just this deeper connection, there's a deeper sense of understanding. And the moment you can kind of just take a deep breath and say, Okay, I'm really truly not in this by myself. So as I reflect on my own, you know, journey that was kind of where I started when it came to, you know, getting backed up and trying to put life together was, you know, going to a support group. I was referred by my doctor. And you know, we kind of just went from there, I went from there. And I found over the years that no matter what part of lupus the part of the lupus journey you're in, you still need support.

Host 5:08
I couldn't agree more. Lauren, do you have anything else to add?

Lauren 5:11
Yeah, Wendy, you really touched on what the main reason that support is so important. Somebody that you mentioned that is really relevant for people with lupus is that they do have multiple doctors that they have to talk with, regularly, and they have to coordinate care with. And I think sometimes the support, and the people that you bring into your life can be very helpful for people to prepare for the appointments. Because at appointments usually have 10-15 minutes to talk with your doctor about what has happened since the last appointment, and all of your concerns. And those are really crucial 10 or 15 minutes. And if you don't have the support in between those appointments, or the people around you, who goes you're going through, people that you can bounce ideas off, people who support you and validate your concerns, then your appointment might not be focused necessarily on all the right things, right?

So one of the ways I think, you know, I'm a nurse, I don't have lupus, but one of the ways that I think I can help people with lupus is to really help them prepare for their doctor's visits, I can be supportive, and I can validate them and their concerns. I could say, Hey, I know you're in pain. I know you can't get out of bed today. I know maybe your loved one doesn't quite understand what you're going through, because you look great. And maybe they just don't really know what kind of concerns that you have. But here are some ways that you can communicate your concerns with your doctor. And sometimes it's hard to get to that point, I think, to prepare for an appointment, if you don't have the people around you who can validate you and support you in that in between time. So I'm really glad that you mentioned multiple doctors that people with us have to navigate. Because I think it's one of the things that makes managing this very difficult and support can really help to make that just a little bit better.

Host 7:09
And, Wendy, you mentioned support groups. The survey that I was talking about earlier, revealed that eight in 10 people with lupus would be interested in joining a support group that focuses on improving their emotional and mental well being. And Wendy, I know that you've had tons of experience not only coordinating and participating in support groups, but developing them as well. And can you share more about what a support group is like and what someone who might be new to the support group area can expect.

Wendy 7:43
So a little bit about me personally, when I went into a support group, I had actually had a very long hospital stay, and was referred by my doctor to a local support group. Because my team felt like I really needed to make sure I had emotional and social support. I was in my mid 20s At the time, and had quite a few changes in my health that were devastating. And so just to add that extra layer of support, not only just from the medical community, but just on a social and emotional level. That's why I was referred to a support group.

And so it's been something that was a good part of, you know, the healing process for me. And support groups can be, you know, I'll say that they do kind of get a bad rap. Because a lot of times people think of them as you know, whiny, you know, people complaining, and there are support groups out there, I do have to, you know, cheer for the ones that we're doing, because we really work to not have something like that. They're kind of a place where you can go, it's confidential, and just let go and talk about the things that are really on your mind. Ask the questions that you might not always be comfortable with, you know, when you're talking to your doctor about, you know, things even in your life, that can affect your health. And so that's one of the key benefits with support groups.

When I decided to do my support group, it was something that was really a new territory for me. I actually hadn't been in a support group for a little while because I had gone back to work and there weren't really many in my area once I, you know, got back up and going in life again. So I went quite some time without one but I noticed that even though I was doing well, I still like desired to have some type of support from the lupus community and the people that I knew in that community. So I organized one and one of my goals or several of my goals were was to create an environment that was warm and inviting, and somewhere that I would want to go. So, in doing that I really designed support groups that have like at least three key components: filled with up to date information by the Lupus Foundation of America, of course; they have some type of fun element, you know, sometimes we might do some type of game or a raffle or something that just kind of, you know, breaks up anything that might be heavy; and then I've opened it up to the families. I noticed that when a patient would come to the support group, they would leave uplifted and happy and, you know, inspired, encouraged to go and you know, continue on this journey. But they were still often going into an environment with people who might not understand lupus, or might not be as supportive as we were to them. So when I saw that, I started opening it up and asking people to invite their loved ones to come and so now we have a family-style support group.

And so those of the some of the things that I've experienced, I noticed when people come, they're looking for several things, they're looking to try to adjust to the changes that lupus has brought on. Many people feel isolated, and alone and mostly afraid by the disease, especially newly diagnosed patients. They're wanting to learn like little tips of communicating with others or telling people basically, what lupus is or how it changed their life. And even the family members come because they want to be able to be useful to their loved ones. So it's been an evolving thing from when I was in a support group where it was just kind of go get everything off your chest, and there was no call to action or embrace of the whole family.

Host 11:59
And having loved ones, they're so great, because not only can they expand just their knowledge of lupus and what the experience might look like. But they can also meet other caregivers like themselves and have conversations and have that ability just to relate to each other stories and journeys. So that's really powerful.

Given the current climate so much has changed with the pandemic, how has that affected support groups?

Wendy 12:27
Well, yes, we've made a huge switch to virtual. So all of our support groups are now working on Zoom, and we're offering those once a month, we'll be wrapping up soon to end out the year. But we now offer pretty much the same type of platform and communication, it's just that everybody's doing it from their home. Of course, we all have the social aspect and the gathering and eating food and talking and stuff. So we've had to make do with that. But we are still available. We have great visuals during our support group, all of our facilities actually plan out their topics and have resources ready for people who come in. So we've been pretty well prepared. And we've been able to kind of navigate despite that. And I've really been pleasantly surprised to see that a lot of the people that are coming into our support group are new to our organization, or people who that I say have kind of been in the shadows and dealing with lupus kind of alone. So that's been very beneficial for our virtual world. And we've also had people from other areas that otherwise wouldn't be able to, you know, attend. So it's been helpful.

Also, for those that might not feel well, I've noticed that it's been such a huge benefit for the lupus community. Because you know, we could be up one minute down the other. And so it still gives people the opportunity to attend, because they don't have to drive anywhere and make the effort to get to an actual location.

Host 14:12
Lauren, Where can someone find more information about support groups in their area?

Lauren 14:17
I think it's I think it's important when you shared. There are now so many virtual opportunities for people to really get connected and can engage with each other as a foundation, on our website, lupus.org. You can go to a tab get local. And then you can find your local in your region and then find if there are support groups in that area. And maybe they've got virtual platforms and maybe they have maybe they don't have anything right now because of the pandemic but it's a great place to connect so that when they are available again, do that.

If you don't have support groups in your state, I think LupusConnect, which is the the foundation's online support community can be a really great place to connect with other people, if you use it as a foundation really put this support community together within partner called Inspire. And it's grown to be a very robust community of 15,000 members worldwide from over 115 different countries. So it's really big, it's a great place to meet others purpose, to get talking to swap ideas, really provide that support, and get the support that is needed. And caregivers can join, as well. So those are two places that people can get started in finding online support.

One thing I wanted to say too, is that sometimes, in talking with people with lupus I found, there are some folks who are going to get really excited, and they jump right into a support group, they want to be a part of everything, are there others who say, No, I'm not interested in talking with people, I don't want to do the support group, I just want the information. And maybe they don't want to quite right now identify as a person living with lupus, maybe it's just not the right time. But I really think this year with all the online options, that it's a great way for people who maybe weren't so keen on joining support groups can try it out and get connected. You know, for people that never really thought that they would go to a support group. And they can get the support that they need. And I really think that this year, we are all finding out that we all are the kind of people that need support, whether we were that person before or not, we are all those people. And so it's kind of a silver lining to this crazy year that virtual platforms are evolving and are becoming more available. And then, Wendy, I love that you involve family members, because sometimes a person isn't ready for a support group. But a family member might be able to go and attend the group, or engage with others in their place.

Wendy 17:00
I'm so glad you said that. And all of those points that you made are so true. So for those that might not feel that they need support, I'm gonna tell you, I have worked to establish the support groups in our region. And I found that I've needed it in my 20 years of living with lupus. And that's what I think people might not be aware of is, no matter where you are, you could be newly diagnosed, or you could be someone like me that has, you know, educated themselves on lupus, has been very active in the community and feels like they have a pretty good handle on the disease. And I learned something new every time in a support group.

I also want to share that when you're feeling well, or you've been doing well, it's important to visit a support group, because you're the type of person that people who might be having a harder time, need to hear from or see, because it gives them hope and lets them know, like, oh, well, this, this person was able to get through all of this than I can do it the same as well. And so getting tips from other patients is very, very important to people who come to support groups. And you'll be surprised the things that people figure out, and the little nuances that they, you know, come up with just to get through each day, or the challenges. And so that's really neat to learn. And I'm so glad that you mentioned that, you know, family members can go. I've definitely seen this in our own groups, we've had family members come because their loved one hasn't been ready to join a support group or doesn't want to talk. So they've come and they've gotten the information. And they've gotten the support that they've needed. You know, a lot of times when you're a caregiver, you don't realize that you need the support to help somebody with lupus. And so that's one of the things I've loved is that it can be a dual, you know, method of health for people on this lupus journey.

Host 19:05
And one thing I do want to ask is, if there aren't support group meetings in someone's area, and the webinars support groups aren't available for some reason, how do you recommend that someone build their support? Lauren, I'll start with you.

Lauren 19:19
Oh, that's a great question. One of the resources that I usually recommend to people who are either newly diagnosed or who are newly beginning to manage their lipids, is to sign up for our email series called take charge, didn't go to lupus.org and then the tab for programs and services to sign up for this weekly email. And one of the emails really focuses on how to talk about your lupus to other people or how to pitch your lupus journey to people. And I really think one of the first steps in building your support is learning how to talk to people in your life about lupus at a very basic level. And then also about what that means for you, how does lupus affect you. And sometimes the people in your life, people who love you don't really understand what you're going through. And so being able to communicate that, and let them know that, hey, you know, this is what lupus looks like, for me, this is how it affects my life, then it might, it makes it easier to build your support. Because anyone who loves you will want to know about this really big part of your life, lupus and how it can affect you.

Host 20:30
And Wendy, do you have anything to add?

Wendy 20:35
I think that I think that's a good start. I think if you're really interested, you should definitely, you know, make sure you're going through and and we have a lot of resources, like you mentioned the Take Charge and participating in those. And that kind of helps you evolve and how you can support others. It's really important when you do a support group, that you are able to not only comfortably talk about lupus and share, you know, correct information. But it's also something you have to be willing to be a little bit vulnerable about, you know, your story doesn't take precedence, but it's a reference point for others. So you may have to open up about things that may be a little tough, you know, when you're talking to other people. So those are some of the things to keep in mind as well.

Host 21:27
Lauren, you touched on this a little bit earlier, Wendy, you too: what are some resources that someone who is affected by lupus, so a person with lupus or a caregiver might find helpful if they're looking for support?

Lauren 21:40
One of the services that we provide here at the Foundation is the health educator service. We have health educators who can answer your questions in Spanish or in English. And we would love for you to reach out to us if you've got questions. Or if you're preparing for a doctor's visit. Or if you're just looking for information about lupus, please do just reach out. Our phone number is 800-558-0121. Or you can also send us an email on our website at lupus.org/healtheducator.

Host 22:16
Great. And Wendy, do you have anything to add? I know, Lauren really covered all the bases.

Wendy 22:21
Yes, I think she definitely covered the bases, utilizing the resources online. When we do our in person meetings, we also have printed materials available. And just to let people know when we are in person, we do have resources that they can pick up.

Host 22:38
So as we wrap up, I think this has been such a great conversation, especially on just the importance of support, as well as resources that folks can utilize. Are there any final thoughts that you would like to leave our listeners with?

Lauren 22:53
I think it's important to remember that being a part of a support group or building the people around you who can support you and advocate for you isn't really a linear process. It's not like you gather around your support, and then you're good to go. Sometimes your support needs change. Sometimes you may need more from people. And so just continue to communicate that to people around you continue to reach out, if you feel like you're stuck. Don't hesitate to reach out to the Lupus Foundation of America, see if you can get some resources and some direction and just never be afraid to ask for help.

Wendy 23:30
Yeah, and I think I'd like to leave the that support isn't something that is negative, it's okay to need help. And when you go to a support group, that's what it's about. It's about building you up, not just you know, listening to you, or listening to others, you know, complain or be downtrodden about being with lupus. The goal of a support group is to empower you and enable you to you know, go through this whole journey without feeling defeated and to navigate this journey with strength and encouragement and, you know, knowledge. So those are what those are the things that I want people to remember when, when we offer support.

Host 24:22
Thank you both so much. I really appreciate your time today.

Wendy 24:26
Thank you so much.

Host 24:28
For those listening and you can find more information about the importance of support, as well as various resources on lupus.org. Also, if you'd like to talk to one of our health educators, you can submit an inquiry at lupus.org/healtheducator and if you want to connect with others to find emotional support, or just to talk about the daily challenges of lupus visit our community LupusConnect which is an online social community. Easy to sign up all you have to do is visit lupus.org/lupusconnect and you can check out previous episodes of The Expert Series by visiting lupus.org/theexpertseries. Have a great day.

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Episode 1: Lupus Nephritis

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