"Social Wellness, Making Connections and Helping Others Understand What You Go through with Lupus" Chat Transcript for Ms. Cindy Coney

Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Ms. Cindy Coney.

Cindy Coney is a nationally recognized speaker and educator. She holds a Master’s Degree in Educational Leadership and is a Certified Prevention Professional. For over 25 years, Cindy led a non-profit agency which developed health and prevention programs. Under her leadership, the agency grew from a locally based non-profit to a nationally recognized organization. The programs received the highest designation possible by the federal government and were implemented in over 3,500 school systems across the country.

In 2006, Cindy founded Monarch Training and Consulting, LLC. Drawing on her vast experience as a trainer and a consultant in education and health she has continued to work with organizations to build quality training programs, develop curriculum for schools and design infrastructure to ensure sustainability of health and prevention programs. She also consults with non-profit organizations in Leadership, Board Development and Diversifying Revenue Streams. She was recently selected as a national trainer in School Health by the Centers for Disease Control and Prevention (CDC). Cindy is adept at Social Marketing and has the skills and ability to deeply understand the needs of target audiences and design the structure and programs to meet and support those needs.

Over 25 years ago, Cindy was diagnosed with Systemic Lupus Erythematosus. The illness has created in her a tremendous zest for living life fully and helping others do the same. Since her diagnosis, she has driven a race car 122 mph, flown in a hot air balloon and jumped from a moving train in Morocco! She is currently the Vice President of the Board of the Lupus Foundation of America. Cindy enjoys spending time with her two grown daughters and her husband, and walking their 2 Wheaten Terriers around the neighborhood.

We welcome Ms. Coney, and thank her for joining us this afternoon.

Without further delay, let's begin. The first question comes to us from Charlotte, NC.

Moderator
I have been classified as disabled by SS. Since then (July), I find myself withdrawing from my friends and family. Is this normal?

Ms. Coney
Let me begin by saying I don’t believe there is a such thing as “normal.” You are going through a tremendous change, from who you were to who you are going to be. You are in the process of creating a “new normal” for yourself. The Social Security label of “disabled” is simply that, a label and a classification for benefits. If it becomes how you see yourself, you may find life less meaningful. Give yourself permission to grieve the “old life” and then begin to reach out. Our social connections are crucial to our emotional well-being. Try setting a goal of reaching out to one person a week, then perhaps two, until your social network is reestablished. Be gentle with yourself!

Moderator
I have no support! My husband cannot accept it. He constantly complains b/c I am tired when I get home from work. (I'm a teacher). He gets very angry and says horrible things. When I miss work, I lose $$ that he has to make up, which he yells about! My principals are completely unsupportive and try to find any reason to fire me, and my family is not any better. My mom minimizes it and always complains about her pains (of age) and my sister has SLE and is much worse than me. I just don't know what to do anymore. I am on antidepressants and the counselor made me feel worse. What can I do?? The blogs also make me feel worse. -- Johnstown, PA

Ms. Coney
Sometimes it is helpful to look at our lives in terms of things we can control and things we can’t control. Other people’s behavior goes under the category of “things we can’t control.” As much as you would like for your husband, your principal and your mom to understand what you are going through, I don’t believe that is possible. Each person has his/her own ways of dealing with illness of a loved one.

Since you can’t control their behavior, I recommend you focus on things you can control. You must create a support network of people who do give you what you need and want. I have a cadre of people who support me in different ways .I often call my best friend when I need someone to listen (even while I vent sometimes). My sister-in-law also listens exquisitely. I always feel she “hears” what I’m saying. Look for these people in your life. You choose who you want to be around you. Embrace the power in that choice and choose some people who bring you joy and lift your spirits.

Moderator
How can I make my boss, co-workers, etc. understand what I am going through with lupus without looking like I'm complaining? -- Canada

Ms. Coney
I completely support you in not wanting to be a “victim” of your disease, but wanting others to understand. First, others will never completely understand what you are going through. Lupus is more challenging than other diseases in this regard, because there are days you look good, but don’t necessarily feel good. We are a visual society and assume if someone looks good they are fine. The unpredictability of the disease is also unsettling to others (and ourselves) who see you one minute feeling fine and then perhaps not able to do something later in the same day. I often think if I were watching (versus actively participating) in the disease, I would have a hard time understanding it as well. Try to help others understand by giving factual information. It isn’t necessary to tell people all of the details, but statement likes, “I have a great deal of inflammation in my body and it is making me very tired today” can be very helpful.

Moderator
Why do so many people with lupus blame everything that goes wrong with them on lupus? – Virginia

Ms. Coney
I think that is human nature. We know we are living with a chronic illness, so immediately, if "something goes wrong," we look there first. The longer a person lives with the disease, the easier it becomes for him/her to discern whether the issue is lupus related or not.

Angela
I have been going through the same thing as everyone else. How do I overcome this, when it seems that others do not care or understand?

Ms. Coney
As I have mentioned, it is very difficult for someone else to understand exactly what you are going through, just as it is difficult for you to fully understand what someone else might be going through. It is helpful to provide information and I've found it helpful to give small amounts of information at a time. You might describe briefly how you are feeling one day. Or explain what a doctor has told you. It is best to only give the amount of info that you believe the other person is ready to hear.

Moderator
How helpful are support groups in coping with lupus?

Ms. Coney
It varies, depending on the training and professionalism of the leader. LFA has some fabulous support groups around the country. You might want to try attending one or two meetings, if they are held in your area and see if you receive benefit.

Moderator
What are your thoughts on in-person support groups versus online support groups or message boards?

Ms. Coney
It depends on what the individual finds the best way to communicate. I have two daughters who often prefer communicating virtually, yet I have friends that it just would not be the same if I did not see them face to face. This is a personal preference and depends on your preferred method and what you want to get from the experience.

Moderator
As mothers of small children, my friends and I are all tired. I wish the English language had a word for the extreme fatigue that we with lupus endure. How can I help my friends to understand? This social isolation has been the worst effect of the illness for me. Thanks ... great subject. -- Evergreen, CO

Ms. Coney
Social isolation can have such devastating effects on both our mental and emotional health. I applaud you for recognizing this. Now, the question is how do you begin to create a social network, even when you are exhausted? You might start by sitting with a friend who has children the same age, grocery shopping together, taking the children to the library together. I would suggest looking for things that you are already doing and seeing if there is a way to do these things with others. This way there is no extra energy required. Bottom line, when your children are young, this is the most challenging time to have adult relationships. Compound it with the fatigue from your lupus and it seems impossible. It is not impossible, but requires a bit more thought. Both of my children are now adults -- trust me, it does get easier!!! When you come up with the new word for extreme fatigue, let me know!

Angela
What were the first symptoms that you had before being diagnosed with lupus?

Ms. Coney
I believe what you may really be asking is how I dealt with my lupus diagnosis. I can tell you that I was 25 years old, newly married and beginning my career as a teacher. Like many of the people on this chat, I went from being an active 25 year old to someone who barely had the energy to get out of bed in the morning. I first tried to deny the diagnosis ... which did not work!! I found that I needed more rest and I needed the support of the people around me to be functional. I began by taking my husband to some of my doctor's appointments with me. Hearing it first-hand helped him understand. Sharing with co-workers came more slowly. I first had to explain what lupus is (don't you wish everyone already knew!!), then I would briefly describe a symptom I might be having. In my case, because I'm so "chatty" people started to realize that when I was quiet, I didn't feel well.

linda r
What is the best way to handle unsolicited medical advice? Everyone seems to think they have a cure or know what will make us better, and sometimes they are off the wall.

Ms. Coney
Linda, I'm laughing out loud!!! LOL. That was a good long laugh, just what we all needed. My question is, if all these cures are out there, why do we still have lupus! In all seriousness, I just nod and say thank you. It is easier. If someone gets pushy, I tell them I don't want to try anything new, but will get back to them, if I decide to try it.

Keith
I am the husband of a lupus sufferer. I have started a Cause Page in hopes of spreading awareness about this terrible disease. I am thinking about hosting an online discussion group, where those who are afflicted, their friends and loved ones can discuss their thoughts, feelings, concerns, and just share whatever they wish concerning lupus. Do you think this is a good idea or should I not go down that road?

Ms. Coney
Keith, I admire your support of your wife. You can see from this chat that people are clamoring for support like yours. As for starting the chat yourself, I would not do that, because sometimes the chat rooms where everyone is sharing concerns, etc. can spiral into negativity and without professional support it is difficult to right that ship. I would defer to the resources that are already available. I'm going to ask our Moderator to post links to the LFA sites that might be useful to you, then you can direct people to those. Thanks again, Keith for supporting one of us with lupus!!!

Moderator
Thanks Cindy. Here are some links which may be of help to you. You can check out the LFA's message boards at http://www.lupus.org/messageboards.

You can follow the LFA's blog here http://lfa-inc.blogspot.com

You can read the online version of our magazine, Lupus Now. http://www.lupusnow.org

You also might want to sign up to receive our free enewsletters. You can do so here http://donate.lupus.org/site/QuickReg

You can join LFA's Cause page in Facebook at http://www.causes.com/LupusFoundationofAmerica

And you can follow us on Twitter at http://twitter.com/LupusOrg

LFA is in MySpace at http://www.myspace.com/lupusfoundationofamerica

Moderator
How do you politely respond to someone that says "How can you be tired when you haven't done anything"? -- Frisco, TX

Ms. Coney
By telling them to think about the last time they had the flu, or were sick. They probably didn’t do anything but stay in bed and were still exhausted. You can explain that this is the same process that is going on in your body when your lupus is active; there just isn’t a flu bug present.

Moderator
How does a widowed mother who has teenage children cope with trying to live every day with pain and the high cost of medication in order to survive and medication being so high but you qualify for no assistance because you are $900 over getting Medicaid? I have systemic lupus and trying to work and raise a healthy family but it is hard when you can't take care of yourself. There are not even local support groups for people with lupus or Financial Assistance. I don't want disability; I just want to be compliant with my medications and be able to see that doctor once a month in which visits are $200 and $300 a month. Cancer gets assistance. We have no cure either! -- Urbana, IL

Ms. Coney
I wish more than anything in the world I could solve this problem. Unfortunately, you are talking about systemic change that must take place in our country. I admire you for reaching out and asking the tough question. I encourage you to become an advocate, to speak up for the care you need, deserve and are not receiving. Attend LFA’s Advocacy Day and make your voice heard in DC. One person can sometimes make tremendous change in a system, especially when her voice is joined with hundreds and thousands of others. Cancer gets assistance because people speak up!!

Unfortunately, what I have recommended will not solve your problems today. There is no solution that I can offer that will ease your financial burden immediately. Educate yourself as much as possible on any assistance that is available. Since I received this question, you are obviously accessing the LFA website. Continue to do this. Work with LFA to explore the possibility of getting a support group started in your area.

Anthony
How do you cope with the isolation when you have no family or friends … and even church members have moved on? This is the toughest part for me. Plus I have other disease processes that limit my mobility. Thanks!

Ms. Coney
Anthony, you might begin by visiting some of the online resources that we have offered today. Social networking is a wonderful resource for those with limited mobility. You might even find that there is someone near you with whom you can connect in person. Please, please do reach out; social isolation can be extremely depressing and we don't want to compound the issues you are facing!!

Aless 1298
Ms. Coney, you mentioned dealing with work and co-workers. Any additional advice you can give on this ?

Ms. Coney
I have worked all of my adult life and was diagnosed in 1980, so I have lots of experience with this. What I have found is that people want to know different amounts of information. I had a few friends at work who would ask how I was REALLY feeling! We would go to lunch and talk about it. I had other co-workers who would ask, but only wanted a tiny bit of info, so that is all I shared. As I mentioned, even on days when I "looked good" those closest to me knew that perhaps I wasn't always feeling that well. I find you just have to learn to judge how much to share with others.

Jessamine
Many times when I’m in a flare, my husband will suggest making plans for something like a family vacation next spring. I haven’t been able to help him understand that planning future activities when I’m feeling especially bad is a source of stress for me. I end up worrying about how I’ll be feeling then, knowing I’d feel too guilty to cancel etc. He can’t seem to understand why “having something to look forward to” doesn’t help me through a flare. How can I better explain this to him?

Ms. Coney
Jessamine, I'm a Libra, so I see both sides of this issue. Your husband sees things from his perspective and (like me) likes to have something positive to look forward to. Again ... hooray for a supportive husband. One of my favorite books is Gary Chapman's The Five Languages of Love. He explains that we all give love in our preferred styles ... whether it is the receiver’s preferred style of not! If you can, it might be helpful to acknowledge what your husband is trying to do, but explain that you can only appreciate his gift when you are feeling stronger. On your side, you might not want to focus too much on what you can't do in the future. I've heard FEAR described as Future Events Appearing Real. It might be fun to make the plans when you are feeling strong (buy the trip insurance) and let her rip!!

linda r
Do local chapters have more information on resources for those who are struggling with issues that surround lupus, like the woman who had financial difficulties?

Ms. Coney
Local chapters can be a tremendous resource for you. They often offer educational programs and will bring in speakers who specifically address financial issues, social security benefits, etc. They also offer support groups, where local speakers are invited to share their knowledge and expertise.

I'm going to ask the moderator to post a link, so that you can find a chapter near you.

Moderator
To find an LFA chapter near you, visit http://www.lupus.org/chapters

YoMe
Ms. Coney, do you have any advice on dealing with your physician concerning new medications available when current meds are not doing anything for you? Or if new medications they are prescribing are approved by the FDA? I get concerned that the side effects are not worth trying something new.

Ms. Coney
Well, you have probably guessed that I have a comment on everything and speak up! I often take articles, web links, and new information to my doctors and discuss them. One thing that we cannot be when we are advocating for our own health is shy. I encourage you to speak up and explain why you believe a medication is not working. It helps to be specific. Patients often just say, "I don't feel good," or "I don't think this medicine is working." We've got to learn to be more specific and articulate the reasons you believe this to be true.

Moderator
I have had SLE with kidney involvement for 10 years. I would love to be more outgoing and adventurous, but I find that I am hindered by the fear of experiencing a major flare brought on by not following the "rules" (such as avoiding excessive sunlight, minimizing risks of infection, keeping hydrated, etc). What words of advice can you give to overcoming these fears and achieving one's dreams? -- Holt, MI

Ms. Coney
I am so sorry that you are experiencing kidney involvement! I am not a big fan of "rules," so let me start there. Part of learning to live with your "new normal" is learning where your boundaries are. You might want to start with small adventurous outings (no bungee jumping on the first outing!) and move up as your body allows. I've done all kinds of fun stuff since my diagnosis, but I've done most of it with caution (usually) and knowing what the repercussions might be. Please, please, please, don't ever give up on achieving your dreams. That is what makes life worth living ... lupus or not!

Moderator
In a new dating relationship when do you suggest telling your partner that you have lupus? How should you go about telling them so they don't get scared?

Ms. Coney
There is no perfect time to tell someone that you have lupus. In a new relationship, I would treat the information just as I would any other personal and intimate information. The better you know someone and the deeper the relationship, often the easier it is to share something personal. I believe the way you share the information is equally as important as when you share it. It sounds like you want to be truthful, yet without scaring the other person. I commend you for this. Unfortunately, you never know how another person will respond to your illness, because you do not know their history of dealing with such things. Some people might take the news in stride right from the beginning, others may be frightened and others may even choose to treat you as if the illness is not present. I do not know the severity of your disease, but I'm assuming (shame on me) that perhaps it is mild to moderate, if you are dating someone and they don't know. If it were me, I would allow the new relationship to progress a bit, then very factually share some information about the disease. I would not handle it as a "secret," but as just a part of who you are. I would not try to hide symptoms, or issues that you might be having, but begin to educate the other person. Remember, he/she may never have heard of lupus, so it will be up to you to provide factual information. You might want to recommend the person visit the LFA website, where you know the information is accurate. Best wishes with your relationship and with managing your lupus.

Moderator
When people find out that I have lupus, they often respond by saying, "you don't look sick." I don't know what to say to that comment. What would be a good response to this statement? -- Acworth, GA

Ms. Coney
So happy you asked this. It is a question that lupus patients often are asked. My response is that “Aren’t I lucky! I only wish that my inside would look as healthy as my outside.” I let it go at that, although I never cease to be amazed at the somewhat bizarre things that people say! People are so often misguided in their attempts to help us. Just remember, they are trying to help because they care about you, even if the attempt is laughable at times!!

Ms. Coney
Good bye to everyone ... It has been great being with you today. Keep smiling, keep putting one foot in front of the other and let's all pray for a cure to come soon :)

Moderator
That is all the time we have for today’s chat. Thank you to Ms. Cindy Coney for joining us.

Please join us for a special Monday, November 23 webchat at 3 p.m. Eastern Time. Our guest expert will be Dr. Sam Lim, who will discuss Medication Adherence.

Help spread the word about our lupus chats. See you on Monday, the 23rd.