Q&A with Ms. Cindy Coney - Lupus and Stress

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. I have had chronic insomnia since being diagnosed with SLE in 2000. How much of role does SLE-related stress play in insomnia and what can be done to help it? Glendale, CA

Insomnia can have many causes, including a side effect of medications. I would first recommend you speak with your doctor about this. We do know, however that stress can play a role in insomnia, even in people not dealing with lupus. The diagnosis of lupus can certainly be stressful. There are many “tips” that I have read throughout my years of living with lupus for insomnia including: decreasing or eliminating caffeine, winding down before bedtime (I read to unwind), not exercising for a few hours before bedtime and making sure that the bedroom is comfortable; dark, quiet and a comfortable temperature. You may also want to find a stress reduction technique that helps you relax. Yoga, meditation, guided visualization, deep breathing and tai chi might all be options. Lastly, I do not know if you currently do or can exercise, but this may also help reduce stress and help you sleep better. Find a form of exercise that you can do and that does not negatively impact your lupus. For me, this is walking. Some days it is only around the block and others it is a few miles, depending on how I am feeling.

2. What can I do if my life is out of balance and I cannot find the balance on my own? Puyallup, WA

There are many things you can do. There are people who “coach” others to help them balance their lives. Just like an athletic coach, this individual would help you identify the areas of your life that are out of balance and then work with you to set personal goals and hold you accountable for achieving them. This can be expensive, so another option is to recruit a friend. You will first need to identify the areas of your life that are out of balance: career, physical health, fun and recreation, financial health, mental/emotional health, spiritual health, community involvement, intimacy/romance or friends/family. Then set a few goals in that area. You will be MUCH more likely to accomplish your goals, if your friend, or a professional is there to hold you accountable. I encourage you to begin by setting small, realistic goals. The more success you have, the more momentum you will have to set more and larger goals. You may start with something as simple as walking around the block 3 times a week, or speaking to 3 people about a new career. Small, realistic and measurable lead to success! Also, many people (especially woman, in my experience) are reluctant to ask for help, or delegate. If you are time pressured, this is the only way you may be able to get a little additional time in your day. Because lupus can cause fatigue, it is important to manage that energy effectively and spend it on things that are important. Prioritizing is also key!

3. How can one deal with stress and not let it get you down or relax and not let it bother you? Flushing, OH & Arcadia, CA

Oh, I wish I had a magic wand to make everyone’s stress go away! Here is one of the ways of dealing with stress that has helped me the most. When something begins to bother you (the earlier in the cycle, the better), go ahead and place your attention on it. Ask yourself, “Is this something I have control over?”. If the answer is yes and there is something concrete you can do, make the change. If you can’t, you must learn to let it go. Ruminating over and over and over again about something we have no control over is very stressful and counter productive.

4. How much stress is too much stress? I get stressed at work daily and usually by the time I get home I'm hurting. Should I be concerned? Norman, OK

Merriam-Webster dictionary defines stress as “a state resulting from a stress;especially: one of bodily or mental tension resulting from factors that tend to alter an existent equilibrium.” Basically, stress is your body’s way of responding to a demand. We each respond differently. An event that causes one person stress, may not bother another person at all. Remember, long, long ago we were all endowed with the flight or fight response, so that we could outrun tigers and lions. Unfortunately, today, our bodies do not know when you are stressed, if you are about to be eaten by a lion for lunch, or just angry at the driver that cut you off on the interstate, so the same chemicals get dumped into our bodies. This is why many diseases are stress-related. Our bodies cannot handle the continuous overload of stress hormones and eventually they take a toll. So, to answer your question, if everyday you are feeling stressed at work and by the time you get home, you are hurting, it certainly sounds like you have too much stress in your life. The two ways to immediately deal with this are to decrease the demands being placed on you, or increase the resources you have available to deal with them.

5. How do I balance stress when you just don’t have that support in a relationship? New York, NY

Unfortunately, it sounds like you are going to need to find ways to balance your life without the support of another person. This means that you will need to find ways to incorporate stress reduction techniques into your personal life. Several are mentioned in the answer to question #1. It is also important, as mention in question #3 to identify the things that you have control over. Ultimately, we do not have control over other people’s decisions, only our own, but we do have control over many, many more decisions in our lives than we usually think. Ask yourself what needs to be changed to reduce your stress, then begin by taking tiny steps in that direction.

6. Since being diagnosed with lupus, my most difficult times with stress occur in the middle of the night. I will feel fine when I go to bed. I will be at peace at that point. But at 2 a.m., I wake up with tremendous stress: I am sweating, thinking about worst-case scenarios with my Lupus, and worrying about everything. What do you suggest? I have been meditating, praying, and reading. That only helps somewhat. Raritan, NJ

Oh, my, I have the exact same problem! I’m including a poem I wrote about this issue and hope that you find a bit of comfort in it:

Return to Now
By Cindy Coney
The unknown,
the fear,
thoughts like monsters under the bed
that wake you in the night.
Worry about what might happen.
Venturing beyond the edge of now
looking over a chasm of doubt.
A future fogged in
hidden from view,
solace only found in the present.
A deep breath
in then out.

I wish I had a wonderful answer for you. Reading helps me the most.

7. How does a person with Lupus, deal with the stress lupus puts on a family, and not let that cause one stress itself? Bloomington, IN

Lupus will cause stress on a family, no matter how much we wish it were not true. I believe that having open conversations about this between family members is very helpful. It helps to express feelings and concerns out loud and deal with them as a family. It also helps, on your good days to do fun things to offset some of the stress. Planning family events, even a game night, based on your energy helps. Do not feel that you have to be “artificially” strong for your family. This will cause you additional stress and deplete your energy. It is better to share what you are going through (depending on the age of children) than to try to hide it. I’ve found that no matter how hard I try to “hide” what I’m going through, everyone usually knows and is more concerned because I’m hiding it. The unknown is often more frightening than the known. Like you, I worry about the stress on my children and now on my elderly parents, but lupus is a reality that we all must learn to live with.

8. My wife has lived with lupus for 35years. It’s under control pretty well with the medications she’s on. My question is she works a lot of time when she comes home she is so short with me, and I think that working 6 hours or more is not good for her lupus. When I say something like “You are working too much” or “It’s not good for you”, she gets very upset. Can you tell me if her working that much can stress her out? Freemansburg, PA

First, congratulations on 35 years of marriage and for being supportive enough of your wife to write in with a question! There are many, many patients with lupus who do not have this support and would love to. To answer your question, living with lupus is very challenging, as you know. Sometimes, we, as people living with lupus want to be taken care of, other times we want more than anything to retain our independence. I’ve laughed that we should wear signs around our necks-Today I want to be independent and on the flip side- Today I want you to take care of me. That way, family members and spouses would know what we want. So, since there is no sign around your wife’s neck, I’m guessing she wants her independence. The way the statements are written in the question, may feel like you are telling her what to do and it sounds like she doesn’t like that. Perhaps try something along these lines. Her name, I feel bad when I see you coming home from work tired and stressed and I’m concerned about you and your lupus. Would you like to talk about cutting back, so that you feel better? This way, you are expressing your concern and love, while allowing her to keep her independence. Good communication is key to living well together with lupus.

9. The picture of one nerve left is totally me. I am so moody and snippy. How do I get out of this mood? Does the lupus do this? I cannot concentrate on anything, which makes me even more moody. I try to avoid family and friends this is not good. Monroe, MI

Lupus and the medications we take to manage it can do a lot of things, which may include moodiness and an inability to concentrate. So, you’ll find lots of tips in the answers to the questions above, but above all, YOU must find a way that works for you. Often, we look to others to make us happy and this just isn’t possible. We must find that happiness within ourselves first. I can tell you that I have an art room…well, it is actually the tiny laundry room, but it has a formica countertop that I have commandeered for art making! When I feel stressed, overwhelmed, or just downright snippy, I retreat to my art space and make art…collage, jewelry, whatever. This really helps. I suggest you find something that you really like to do and find some time to do it…whatever it is. That is one way that you can lift your own mood a bit. Volunteer somewhere. It is hard to be moody and snippy when you are helping others. You may find that you feel much better afterwards. Do you have a pet? Walking a dog around the block can also brighten your mood. If you love children, go to a park and watch them play and giggle. Who doesn’t feel happy watching children play? You get the picture. You’ve got to get outside of yourself and involved in things that make you smile. Also, when you smile, your body doesn’t know if you are truly happy or not, so you can start by “faking it ‘til you make it”!

10. I live with my girlfriend which I love very much. She has lupus and seems to be getting stressed faster. Right at the moment we are going thru some hard times relationship wise. I guess my question is. Is her stress level ever going to get back under control? She can really get upset at the most simplest of things. I love my girlfriend and would do anything to stay with her. Is there any advice you can give me to help her out? New York, NY

Having a chronic illness is stressful, especially because we never know what the future may hold. Uncertainty can cause stress. Whether or not your girlfriend’s stress level will ever get back under “control” is hard to tell. She’s very lucky that she has someone who cares as much as you do about her. I don’t know how long ago her lupus was diagnosed, but for many people the first few months and years following the diagnosis are the most challenging, because the person is learning to live within new boundaries, while the doctor’s are trying to figure out the best treatments to use. I like to say we are creating a “new normal” for ourselves. This “new normal” life will not look exactly like the old life, but that does not mean that it is bad. It can still be filled with meaningful things and things that make a person happy. It will be important for your girlfriend to find things in her life that bring her happiness and also ways to relax. Managing stress when you have lupus is very important. You can help her by continuing to show her you love her and if possible, talking honestly about the disease. The more you know, the more you can help her.

11. What are some of the symptoms of stress that you know or have experience with so that we might recognize them as the result of stress? Then also some relief options for the symptoms while dealing with the stress? I am experiencing what might be hair loss or thinning which may be due to some increased stress I am experiencing. Is the hair loss a possible result of stress for people with lupus? Louisville, KY

 am not a doctor, so the first person I would ask about the hair loss is your physician. That said, I have heard about people’s hair thinning when they are under a lot of stress. Stress can take an amazing toll on the body and lead to all types of symptoms. I’m sure you have heard of people who have stomach issues when they are stressed, headaches, heart disease, depression, skin issues and many other issues. I recently read an article that sited the Center’s for Disease Control and Prevention as saying that “75% of all illnesses that are seen by doctor’s are emotionally stress related.” I know that for me, stress can cause my lupus to flare. As you know, that can cause an entire cascade of symptoms, including hair loss or thinning. The best thing you can do is learn to recognize the triggers of your personal stress, because we are not all alike. What stresses you may not stress me! Once you recognize your personal triggers, see my answer to question #3 about things you do and do not have control over. If you can change it, do so, if not, when your mind starts to go over the event over and over again, remind yourself this is “not helpful”.

Positive self-talk can be an extremely powerful tool to help you manage stress. Letting your mind wander to the future and imagine all of the negative outcomes that are possible…all of the “what ifs” will add a great deal of stress to your life. We must learn to stop that feedback loop. For me, repeating “not helpful, Cindy” is extremely helpful. Find a saying that works for you.

12. I work in the PR department for a global company, so there's a fair amount of stress (and travel) that comes with the job. I love what I do, but I want to be mindful of my new limits. Do I really need to consider a career shift, or are there some more effective stress management tips out there (above yoga/meditation, deep breaths, staying organized, getting plenty of rest, etc.)? Nashville, TN

I, too, have been where you are; loving your job, but finding the stress and physical challenges difficult. I can tell you that for me, when I was in that position, the most important thing I could do for myself was get adequate rest. Sometimes it meant going to sleep very early in the evenings and most weekends it meant sleeping late and often taking naps. For a long time, I was able to run an organization without it taking a toll on my body. I also went for a walk every day after work, which was my transition time to release any stress related issues from my day. I even did this when my children were little by finding a track around a playground where I could watch them and walk! Yoga classes one night a week also helped. After many, many years, I chose to do consulting, so that my time was more my own to manage. This decision has worked well for me, but this is a decision that only you will be able to make for yourself, based on the way you are feeling. I don’t think there are any magic ways to make stress go away, only the tips I’ve offered in these questions, but there are lots of ways that help.

13. How can I make my boss and co-workers understand what I am going through with lupus without looking like I'm complaining? Altus, OK

I get asked this question ALL the time. We desperately want others to understand our disease and what we are going through. Lupus is extremely challenging to understand, especially because we often look fine. It is a mixed blessing! Honestly, I don’t always understand it myself and I’ve lived with it 30 years! I have found that sharing that I have the disease and providing the Lupus Foundation of America’s web address (www.lupus.org) can help. You can also have an outside speaker come in for an educational “lunch and learn” session, so people can learn more and ask questions. There is a need for education about lupus, because many people do not understand what it is, or the symptoms. Anything you can do in your community to further education will benefit both you and others.

14. I find myself withdrawing from my friends and family. Is this normal?

I am not a big fan of the word “normal.” I think a better question might be, “Is this normal for me?”. If the answer is no, which I am guessing it is, then you will want to look more closely at the issue. I am assuming that you are withdrawing due to your lupus. If this is the case, be very, very careful. Social isolation is not healthy and can lead to depression. When we live with a chronic illness, often we do not feel well and the tendency may be to always stay home. Yet, we as human beings are social creatures. We need other people in our lives. Even if you are not feeling well, I encourage you to stay connected to others in any way that you can. It can be as simple as a short phone call, an online “face to face” conversation on Skype, or inviting a close friend to drop by for a cup of coffee or tea. I can’t stress how important these connections are to you and your health.

15. How does one keep from always feeling guilty about being the "needy" one?

It is challenging not to feel guilty when you are the one in need. I think one of the easiest ways to keep from feeling guilty is to do small things that you are healthy enough to do for other people when you can. This giving back will make acceptance of others good deeds a bit easier. Also, those around you often really want to help you, but don’t know how. Doing the small things you need often helps them feel like they are doing something to help in your healing. Guilt is an awful feeling, so the better you can feel about accepting other’s help and the more you can feel that you are giving back, the better you will be.