You're Never Alone: Volunteers Talk About Lupus Support

Video Presentation at The SLE Workshop at Hospital for Special Surgery

From a video presentation for The SLE Workshop, a free support and education group held monthly for people with lupus and their families/friends.

Suzy: Hello my name is Suzy Kim, and I coordinate two special programs here at Hospital for Special Surgery offered in collaboration with the SLE Foundation. LupusLine, established in 1988, is a national telephone peer counseling program in which callers are screened and matched to train volunteers with lupus to provide support and counseling from home to home. Our sister program, Charla de Lupus, which means Lupus Chat in Spanish, was started in 1994 to address the growing need to reach out for more underserved communities, specifically the African-American and Hispanic communities. Our Charla program, independent of LupusLine, is a peer health educational program where we provide in-person services at area hospitals or support over the telephone.

I am talking today with two of our peer volunteers, who will be sharing their personal experiences helping through LupusLine and Charla de Lupus. I would like to introduce Lisa Rosenstock, who is a LupusLine counselor, and Damaris Rodriguez, a Charla de Lupus peer health educator.


Reasons for Becoming Peer Volunteers

Suzy: Let me begin by asking both of you what led you volunteer in the specific roles you have taken on in LupusLine and Charla de Lupus?

Lisa: I have had lupus since 1981. I had been living with it for so long when I felt I needed to contribute in some way. I remember when I was diagnosed - all the misinformation and the looks on people's faces when I would say I had lupus and they would say, "what's that?" Just the feeling that I could give back and help someone out. I think my role as a LupusLine counselor is basically being a phone counselor, but what that means is being there for someone and listening to someone who needs to talk.

Suzy: Damaris what actually got you interested in volunteering and what introduced you to the program?

Damaris: Well I have been suffering from lupus for fifteen years now. Being in such a hard situation, where I was not able to reach anyone, I felt like something had to be changed. I started making phone calls and reaching out to people. No one knew what lupus was so I thought it would be to my advantage to join Charla and to be a volunteer.

I could see that even though I was suffering from an illness, I could still contribute aid to someone who was also suffering from it. It feels better, sometimes, to speak to someone facing your same problem - better yet from someone who is trained like a doctor or a social worker. I think there is a need out there. There is a call out there for people like us to help one another and that is what inspired me to become a volunteer for the Charla de Lupus program.

Suzy: That peer support that both of you emphasize in having your own personal experience and stories to share. I just wanted to ask what are some of those challenges that you are speaking about? Your personal experiences? And how have they led you to want to help others facing those same challenges?

Lisa: I think the challenges range from... so many things, really. It goes from marital issues, dealing with your spouse's understanding of the illness, and the anxiety, and the fear surrounding it, to your children's ability to understand it. It goes from basic issues such as not being able to go out in the sun and how you deal with that, and how you deal with your family in terms of the summer time and the sun - going to the beach - going to the pool. Little things - basic things like that - all the way to serious issues and medical issues such as high blood pressure (which I have always experienced) kidney involvement, pregnancy. In my case, I had always had kidney involvement, which progressively got worse, and eventually it got to the point where I needed dialysis and then I was lucky enough to get a kidney transplant. In my case, my husband gave me a kidney so I just feel that there are so many different issues that can need to be addressed.

Suzy: Lisa have you run across another caller in LupusLine who was challenged by those same concerns?

Lisa: Yeah. I would say that for every issue that I have mentioned, I have come across a caller. One in particular, was a woman who was found to be pregnant, as I was, and she was told not to go through with the pregnancy, which is the same thing that happened to me - it was a very scary, fearful situation; you don't know what to do.

I was lucky enough to find doctors that got me through my pregnancy and she was also. But it was all the anxieties and fears - besides knowing you are in good medical care - of what to expect: the fact that you can't take a lot of medications and that you just have to deal with the different symptoms, then there's the fear of having an early delivery and not knowing what happened to the child, and then the fear of the final delivery and having a baby and not knowing if the outcome would be good. It was just a whole bunch of emotions that we had experienced similarly, which I felt made me able to really help her a little bit.

Personal Challenges of Lupus

Suzy: Damaris, I know that you have also been through some personal challenges regarding your ability to carry on a lot of the activities that you used to do prior to your lupus diagnosis. Can you share a little bit of that with us?

Damaris: Sure. I used to be a very independent young woman. I was stricken with the illness when I was very young. It is hard for a young person to actually admit to having such a crippling and chronic illness. My life was just beginning. I was starting to go to school - pre-med school. I had just had a baby and everything was so beautiful for me. And then one morning everything became pitch black. But, I did not let that stop me.

As the years progressed, many medical reasons and lupus resulted in my being bedridden for three years, which was one of my biggest challenges because I was always so independent. Having to depend on my family and friends to get me onto the bed and into the wheelchair, help me do different tasks like doing my hair, washing my mouth, practically feeding me - it made me kind of feel like I was worthless at times. That feeling of worthlessness - that it is a challenge. That is something that we need to overcome slowly but surely. But that makes you kind of strong also because so few people have to muster the strength to admit that they have an illness. Then it gets better and you're tougher for it. I made my decision right then to have faith and to believe in myself and that is still what gets me up right now.

Suzy: What a powerful story. I am sure you get a number of people calling you about the frustrations of their daily living and how it is hard for them to get out of bed. The fatigue that you also mentioned, Damaris. I am wondering what kind of messages - or what do you share with callers in order to help them cope with some of the things that you have brought up?

Damaris: Well one of the things that kept me going and kept me strong was my faith. I am a strong believer. I believe in God 100 percent and He's given me faith to continue. I also had a lot of support from my family and my doctors, and my friends all around, and what I tell the people that I speak to is to just take it day by day. Even though you are used to running around all the time and these things can no longer be done in the same pattern, I know at the end that you'll do it because I've done it personally. Take it day by day. Don't worry and don't hesitate. Things will get better as time goes by. Just be strong and believe that there will be a tomorrow.

Suzy: Taking it day by day is what Damaris has mentioned. Lisa does that resonate?

Lisa: Absolutely. I think a lot of the people who call are very scared. They are nervous. They just want someone to listen to them and to talk to them. I think the important thing is to validate their feelings and let them know that you are there for them and you are listening. I find that there are so many different symptoms that people experience and you have to make it clear to your caller that there are. But you also have to make clear that they cannot compare themselves with other people because there are so many different ways that lupus manifests itself.

At the same time, there's such a common feeling between people that have lupus and there are so many common things - like the fatigue, the joint pain that people may have, the feelings of alienation and being alone, people not understanding, people saying, "oh you look so good," feeling so lousy - I think just letting callers talk and letting them know you will be there for them is enough sometimes.

How Volunteers Help Others Cope with Lupus

Suzy: Both of you have been through enormous struggles and challenges with your own personal symptoms of lupus over the years. I am wondering, what do you tell people who call and describe symptoms completely different from your own? How do you reach out to them when they connect with you?

Lisa: I think that one of the most important things they should know is that of course they have different symptoms - with lupus, no one really has the exact same symptoms. I think the important thing for me is just to make them know they are not alone in the lupus community and that everyone is kind of in the same place because everyone is dealing with different, different things - though they are all feeling the big thing, lupus.

It is important that they know that we are there for them and that they can just bounce things off of us. We can listen to them and we can possibly help direct them in some way, maybe help discuss with them what they can say to their doctor, what they can do to make their family lives a little easier. Again, we can just listen to them, even though we don't have the answers because we're not the doctors. We can just let them know they're not the only ones that have these difficulties. There may not always be answers for their questions, but there is always a way to deal with their problems.

Suzy: What do you tell your callers, Damaris, when they phone you and say that they feel a loss of independence? I know you had mentioned that in your own experience. What do you share with them? How do you help them cope?

Damaris: Well, I will usually get a caller that I will call Ms. M., who is dealing with a lot of parenting problems. As a parent myself, I went through that struggle and I have experienced many of the same things. I let her know that this is not the end of the road. There are different things that you can do to manage this pain. She complains constantly of pain and not being able to spend quality time with her child. I have a child and I used to take quality time. I made that up as my own little thing with him. When I was in a lot of pain, I would tell him, "okay mommy cannot get up and go to the park today, but we can get in bed and talk and do things, crafts, watch TV together, play criss-cross - anything that you want." The important thing is to spend time with that child. If that child doesn't think he is being neglected because "mommy's sick," then you won't feel useless as a mother.

So I advise - speak to your children. Let them know what is going on. They do understand. Even though they are 2, 3 or 4 years-old - they understand. Little by little, they get used to it and they start learning that mommy is going to be sick. There are days when she is going to be okay and some days when she is not. So having that little quality time thing helps a lot. I usually tell them to do that. I know it helps them a lot because they come back to me say, "You know, it did work."

My son is now fifteen and to this day it still works. I am blessed that at least it is helping them in trying to manage the pain, like my co-worker said here, it's different with everyone. You cannot compare yourself with someone else because the pain that I go through, another patient may not go through. Again, you have to take it day by day and try to do different things like outings - try to have hobbies. Do things that will keep you relaxed so this pain can ease some.

Suzy: And you share that with your callers?

Damaris: Yes I do. I share that a lot. A lot of them just call in such desperation and have no self esteem. When you have pain, your self-esteem is at the bottom. You don't feel attractive any more. You just don't want to be outside or be seen, you don't feel pretty enough.

I just let them know that they are pretty and can continue being pretty. They can make it. You have just got to start doing the things you used to do day by day. Again, slowly, you will get back to doing your hair, get back to doing your nails. Just because you have lupus doesn't mean that this is the end of your life. This is just a tiny little obstacle and I know you can overcome it because I have done it.

Lisa: I think that is wonderful. I think it is a very big thing to try and get across to people that lupus should not overtake your life. That it's part of your life. That you can cope with it and deal with it so you don't become a lupus patient. You become a person who's dealing with lupus.

Damaris: I was saying that. Don't let the illness take you, you take the illness. That is what keeps me going.

Commitment to the Programs

Suzy: I know that both of you have been with the program for a long time now and Lisa I know that you were with us when LupusLine first started at its inception in 1988. What has kept you going all these years? It has been so long - twelve years.

Lisa: I am honored to be a long-term member. I do have some callers that I have actually been speaking to for about ten years, I would say, and I really feel that you establish a bond with them. Sometimes the issues don't even change, but the feelings - the emotions behind them - they still need the reinforcement. They still need to know you're there for them. Even though they go through different symptoms and different medical phases, they still need an outsider to listen to them and it is always a different issue that they want to talk about. I have found it is really nice having a relationship with someone for so long that I learned something from it. I feel a real deep satisfaction from just being there for them.

I think when you speak to callers, just the "thank you so much" that you hear at the end of the conversation, the relief you hear in their voices, is worth everything. I really think that is why I just get renewed pleasure out of it. The feeling, I think, is helping me cope with my lupus through the years.

Impact of Being a Peer Volunteer

Suzy: If you had to say a few words about what this volunteer peer experience has been like for you - it's such a unique relationship where a peer person who has lupus is actually speaking over the phone with someone else with lupus. If you had to describe what this experience has been like for you, how would you describe it?

Damaris: Well as a bilingual Charla de Lupus peer health educator, it has brought me immense satisfaction and the reason for that is that it gives me a lot of joy to know that this person is being helped, that I am helping them. Even though I didn't have the privilege of having someone talk to me, I can return the blessing to others just by talking to them, comforting them and giving them the education and support, not only for their own knowledge, but for their families.

It gives me satisfaction also because I know that this person is taking something from me and that is education. I am not only talking to them, I am also listening to them and this is one big clue and one big key of Charla de Lupus peer health educators - you need to listen - to actually know what they're going through makes the experience even better. So this has brought me a lot of joy and it gives me healing to my soul that I am helping someone and that at the end of the conversation they will be going home and they will be talking to their families and they will say hey, I spoke to someone that actually understands me.

Lisa: I would say that she put it wonderfully. I agree with everything you said and I can just say it is a unique, beautiful experience. Just that sense of satisfaction, as I said before. That sense of feeling that you have given something of yourself and made a difference in someone's life and someone's ability to get through the next day and the next day. Just to go on and have some faith that they can cope with this illness.

Why Seeking Peer Support Can Help

Suzy: Thank you. You both gave us such positive messages for people who might even want to call up the line - because I know there's always this apprehension about seeking out support. Having gone through the process and also knowing through your personal experiences what it's like to seek out information and education, what would you share with others who might want to find out more information?

Damaris: I would encourage them to call the line. It will be a great experience for them because they will have someone that's not just a peer health educator, but some type of a - almost like a sister, someone that you could reach out to when that hole is there in your heart. Charla de Lupus has helped a lot of people. I know I have had the experience of talking to some of them and their lives have been turned around totally. I would really encourage every person that is watching this to please call us. There will be someone there for you - just to call and to try us. You will see the relief that you will get in your heart because this program will teach you what you need to know and what will help you live the life of a lupus person, not just a person that is ill, but a human being that is going through something. So don't be afraid and call and there will always be help for you and we will always be there for you.

Lisa: Absolutely. I would say don't hesitate. We all have lupus. We all can empathize with you. There is always someone to talk to you. We all know what it's like to cope with lupus. Please call.

Suzy: Thank you.

Lisa & Damaris: Thank you.

Suzy: To contact LupusLine call 212.606.1952. To contact Charla de Lupus call 212.606.1958. We would like to acknowledge grants from the SLE Foundation and the Hospital Auxiliary and Volunteer Program of the United Hospital Fund, which have helped to make these programs possible.

"You're Never Alone - Volunteers Talk About Lupus Support"

Damaris Rodriguez

Damaris Rodriguez is a 33 year old young women, born in Santurce, Puerto Rico and raised in the Dominican Republic, who lives in New York City with her 15 year-old son. She was diagnosed with SLE in 1986 and was treated with corticosteroids. Damaris worked as a retail manager in the food industry for seven and a half years, but because of her illness had to go on disability. As a result of the long years of continuous steroid treatment, she developed avascular necrosis (AVN), which placed her in a wheelchair for 3 years. There were times when she wanted to give up, but the thought of her son, Clarence, gave her strength. In 1996 she underwent left hip replacement surgery. In 1997, she again had surgery for her right hip and then, had knee surgery. After many months of surgery and rehabilitation, Damaris was able to walk again. She thanks God for her recovery and has dedicated her life to helping others with lupus. Damaris started as a volunteer in 1998 for Hospital for Special Surgery's Charla de Lupus Program and now works part-time as a Program Associate for Charla de Lupus. She is very happy to be part of a program that helps others living with this challenging illness.

Lisa Rosenstock

Lisa Rosenstock was diagnosed with lupus in 1981 after many months of searching for a reason for her skin rashes and abnormal blood counts. After a tropical vacation in the sun, her symptoms intensified. She felt very fatigued and thought she had the flu. Lisa was hospitalized and was finally given the news about this strange sounding illness. She slowly recuperated, decreasing the amounts of prednisone that controlled her lupus. She led a very active life, but did have minor kidney involvement from the start. She was fortunate to become pregnant in 1983, but dealt with high risk issues involving protein in the urine, high blood pressure, and swelling. Lisa's daughter was born premature, but very strong. It is hard to imagine that she is a healthy, beautiful 16 year-old now. Lisa was always very open with her about the "world of lupus," answering her questions on the level that she could understand. Lisa and her husband went through many difficult moments during this process, but they continue to feel that discussion results in less fear and more family support.

Her kidney disease slowly worsened and seemed to be the focus of her lupus. In 1991 Lisa started hemodialysis, which she continued for 3 1/2 years. She was very blessed in 1994 when her husband donated a kidney to her. It is now six years since Lisa's transplant; she is very happy to report that she exercises, enjoys eating and feels wonderful!

Learn more about the SLE Workshop, a free support and education group held monthly as HSS.

Summary by Suzy Kim, Social Work Manager, Rheumatology


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