15 Questions - Balancing Family, Friends, Activities and Lupus

1. I'm a college junior in one of the nation's top meteorology programs, while trying to juggle extracurricular activities, service organization involvement, and a social life.  When life gets too crazy and stressful, I often feel the symptoms of my Lupus begin to takeover.  I'm fairly young and active and was only diagnosed about a year ago.  It's often difficult for me to step back and take some time for my health.  I feel guilty about saying no and I'm afraid that my peers won't understand why sometimes I have to back off a little.  Lupus is not very well-known among people my age and I find it hard to explain.  How do I keep from having such anxieties over doing what is necessary to reduce my stress and stay health?  And how can I explain how having Lupus affects my daily life to my peers?  Tallahassee, FL

I'm actually visiting Tallahassee as I write the answer to your question! I, too, was diagnosed at a young age. I must tell you that for me, the first few years after my diagnosis were the most difficult. Like you, I was still trying to live my life as if nothing had changed AND keep everyone around me happy, which is a difficult task at best. What you will learn over time is that it is worth telling people no sometimes, because then you feel better and are able to more fully participate in the things you enjoy. Guilt is an awful thing! Once you can begin to let go of the guilt, you will be able to choose the things you WANT to do and let go of the things you feel you SHOULD do. This will begin to take shape as your new normal. 

As you mentioned, I know many people do not understand the disease, especially because sometimes you look ok, but don't feel well. I have found that over time, the people closest to me understand the disease a bit better, but others of my acquaintances do not. That is ok. You can do your best to educate those who want to learn about the disease, but not worry about the rest. The most important thing is that you learn what it takes for you to feel your best and learn to set some boundaries. This does get easier over time! It took me many, many years to truly understand that resting when I need to and choosing my activities carefully will allow me to feel the best that I can.

Take a look at your calendar for the upcoming week. What things are absolutely necessary?  Next, look at the things you really want to do. Now, the things that are left need to be your lowest priorities. You might find it helpful each week to do this quick scan of you week to set your priorities in a way that works for you.

Lastly, learn to let go of what others think. You know you would understand and be supportive of a friend who told you she wasn't feeling well. Good friends will be there for you! The ones who don't understand and support you aren't worth worrying about!

2. How can a mother unwind quickly when the stress level has reached its maximum capacity in the mornings before school?  Florissant, MO

Oh, mornings of breakfast, lunches, lost homework and the like can create a very stressful beginning to your day. When my girls were little, we always did as much as possible the night before to limit the morning panic. Clothes were laid out, backpacks paced, etc. However, like you, I was left feeling a bit frazzled when I dropped off the last child. I found it helpful to take a short drive while listening to some relaxing music, before heading to work. These 5-10 minutes of quiet, relaxing time reset my stress level. 

I don't know if you are leaving your home, but if not, a quick walk around the block, a nice warm shower, or 5 minutes of quiet time may be all you need to transition from chaos to calm. However, you must remember to do it every day. Eventually, it becomes habit and you'll find a few quiet minutes will be all you need.

3. How does one relieve stress while having company, especially during holidays? My children have preschoolers that need to be nursed or cared for in other ways. So I end up with most of the cooking and serving to a large family. How do I keep going energy-wise, and how can I share more of the fun, outside the kitchen? I want the best of both worlds, because I want it to be homemade and traditional, and yet stress-free while serving a large family. My husband and sons-in-law don't cook.  Grove, OK

Of course you want it all! So do I! I could give you the cliché answer and tell you can't have it all, but something tells me that isn't going to help you! What I suggest is that you look at your menu and simplify it as much as possible. Are there things on the menu that you could pick up locally and supplement with a few homemade items? Are there things that you could make in advance and freeze before the guests arrive? Are there any items that other family members could make and bring with them? Try simplifying first, if that doesn't work and you still feel stuck in the kitchen, you might need to sit down with your family and explain that you only have so much energy and your priority is spending that energy with the family. See what solutions they come up with. I'm guessing that you've been doing the cooking for years and it has just become the norm. If you really want to change it, talk to your family. They may love having you out of the kitchen!

4. How can you balance stress in your life? Stress is a part of life; some doctors even say that you need some stress in your life to be healthy. I have a very hard time dealing with stress much so that I will let the stress build up which will then cause me to have a flare. Is there another way of dealing with my issues?   Mesquite, TX

Unfortunately, those of us with lupus know that stress can contribute to flares. We also know that it is not always easy to minimize stress.

There are two things that contribute to our stress. Either we have increased demands being placed on us, or we have decreased resources to be able to handle the demands.

Let's begin with the increased demands. Often, when someone is diagnosed with lupus, he or she tries to continue living life as if nothing has changed. With limited energy this can become increasingly difficult. We must learn to reset our priorities, so that we have the energy to do the things in life that are fulfilling to us. This life becomes our new normal. This new normal will often have fewer things scheduled than our old normal. This is where we begin to decrease the demands on us.

The other thing you can focus on is increasing the resources you have to be able to deal with stress. Do you get enough rest? Do you exercise, or have any form of movement incorporated into your life? I've found that my greatest form of relaxation is a walk. Some days when I'm feeling good, it is a long walk, other days it is a walk around the house! Good nutrition also helps us deal with stress more effectively. 
Remember, increased demands and decreased resources = stress.

5. I find that I avoid previous things that brought me both joy and stress such as community organizing.  A part of me wasn’t the old me back without the pain.  I've only been diagnosed with Lupus a year.  So, will I ever get to a place where I can go back and enjoy the things that brought me joy without the stress?  Santa Ana, CA

Yes, yes, yes. I've mentioned many times that the most difficult period of time when dealing with lupus is the first year or so. During that time, we can't understand why we can't do and enjoy all of the things that we did prior to diagnosis. It takes time, mentally, physically and emotionally to adjust to our life with lupus. Often, soon after diagnosis, we are very focused on the things we can't do. We are often angry that we have the disease and want things to be different. Once we start to transition from the way things were before diagnosis ( your "old" normal) to the way things can be (your "new" normal), you will find that you are once again more engaged in life. A good start is to begin tomorrow focusing on the things you CAN do and enjoy.

6. I am re-married with two girls ages 10 and 14. Both girls are constant work.  Struggles with school & drama. Yelling with step-father & sisters every day. This raises my stress and I don't have a place to go and release, and end up getting bed ridden. Lupus gets out of control due to this everyday stress. When I talk to my husband he gets very defensive. What can I do?  It's hard for me to walk due to my neuropathy.  So walks are out... Any suggestions?  Jackson, CA

I'm so sorry you have all of this turmoil in your life. Change is such a difficult thing for people to deal with, plus you are dealing with two adolescent girls! It sounds like some of the current patterns in your home need to be changed. I do not know how long you have been remarried, so I do not know how long these things have been going on in your home. If you are recently remarried, it might take some time for everyone to adjust to the new roles in the household. 

I would begin by calling a halt to the yelling. As hard as it may be for you, you may need to model this behavior for the rest of the family. Begin by telling everyone that you are only going to discuss matters in a calm voice and stick to it, no matter how angry you might feel. This alone should begin to decrease some of the anxiety that you are feeling. You and your new husband also need to discuss who and how you are going to discipline the girls. Once the rules are set, you may need to let go of some control, in order to protect your health. Although it is not easy, we must understand that there are some situations that we do not have control over. Look at what is going on in the home and decide what you can and cannot control, then make every effort to let go of the things you cannot control. If things continue to escalate and you find yourself bedridden, it is probably time for you and your husband to seek professional counseling.

7. I study organization and time management techniques, work out regularly, know that I need to get regular sleep, and incorporate yoga in my routine, and I still have a hard time managing stress. I find that chronic illness adds so many more tasks to my life--medical appointments, bills, refilling and renewing medications, and add to that all of the phone calls required to schedule appointments, coordinate care, request records, etc. It never takes one call--it seems like the health care system is set up to frustrate us! How do you suggest we address these daily frustrations and stressors that are relentless and will always arise?   Houston, TX

let me begin by applauding you for all of the things you are doing to live the best life possible with lupus! You are right, living with a chronic illness, like lupus adds a layer of stress to our lives. Getting answers to medical and insurance questions can be extremely frustrating. I've been teaching people about stress management for years, yet find myself exasperated after explaining to the 5th person why I'm calling! So, here's what I do. When I find myself getting angry and frustrated, I tell myself, “not helpful."Sometimes I have to repeat it over and over and over again to calm down, but if I can keep from escalating the stressful feelings, I can calm down much more quickly. You may find it very helpful to monitor yourself talk when you find yourself in these frustrating situations. Is what you are saying to yourself helping you calm down, or just making the situation worse?

8Sometimes people (coworkers, family) forget I do have a condition. How do I remind them to take it easy on me without telling them as if I'm using it as a crutch or something?   Visalia, CA

The good news is that there must be days when you are doing well enough that people forget that you have lupus! This can however be a mixed blessing for those of us with the disease. You might want to come up with a clever, or funny way to remind people when they forget and ask too much of you, or you might want to share “The Spoon Theory" written by Christine Miserandino.  This way when someone asks you to do too much, you can simply tell them you are out of spoons for the day!

9. I come from a family where if there isn't a full physical manifestation of the illness, you aren't sick.  Between that and they just don't want to talk about it, I find myself isolated.  I can talk to friends, but I feel completely unsupported by the people who should be lending me support. I'm not asking them to bear undue burdens.  I'm not that kind of person.  But I refuse to let this be the elephant in the room.  How can I start a healthy dialog with people who don't want to acknowledge the illness in the place?  Richmond, VA

Many of us with lupus deal with this same dilemma. It is an extremely hard disease to understand, because often you look ok and sometimes you are ok in the morning, then not feeling well by afternoon. I have trouble understanding it myself sometimes and I've had lupus for 30 years! I've learned that people have trouble dealing with illness for all kinds of personal reasons. Some people get angry because they can't fix it; others have had bad experiences in the past and haven't learned healthy ways to offer support. You are most likely going to have to be very clear (and patient) about your needs. My husband used to get angry when I was sick, because he could not make it go away. We talked about it and I shared that it was not helping me. He still occasionally does this, but now we are able to talk about it and both understand where it is coming from.

10. I am in the process of determining whether or not I have SLE.  I have positive ANA's and elevated dsDNA's (1st and 3rd test using Eliza) and negative ANA/dsDNA (2nd test using IFA).  How do I help my husband understand the seemingly contradictory blood work which often comes up? How do I help him understand how I feel (inside and out) when my symptoms are flared?  How do I ask him for help?  Kennewick, WA

Since I do not know anything about the way you and your husband currently communicate, it makes it a little bit more difficult to answer your question. As you may know, women are traditionally stronger empathizers, where men are traditionally more problem solvers. This is just the way we are built! It served us well during the time when men hunted and women stayed home with other women to take care of the hearth. However, it doesn't serve us as well today, especially when we want our husband to understand what we are going through with chronic illness.

Understanding the medical tests associated with the disease may or may not be important for your husband. You might want to concentrate on "how you are feeling-inside and out. As you begin to live your life with a chronic illness, things in your life may change, depending on the symptoms. It is important that your husband understand how important it is for you to take care of yourself. The better you are able to practice good self-care, the better you will feel. Some changes may need to be made over time as you learn just how much you can do.

I've always found it best to share honestly with my husband. It helps for him to accompany me occasionally on doctor's visit, so that he better understands what is going on. Sometimes he has to hear things several times, before he really "gets" it. Lupus is hard for all of us to understand. Try to meet your husband where he is and gradually, over time, by being patient and explaining things, you'll see he'll understand the disease better and be better able to support you.

11. How do you get people to understand how you feel some days are good some are bad but you don’t look like you feel it’s hard to explain it all?  Cahokia, IL

Yes, it is difficult to explain what can sometimes seem like an invisible disease. You might want to direct those that want to learn more about lupus to visit www.lupus.org. There is lots of info. If you have a support group in your area, you might like to take a friend with you or share the Lupus Now magazine. All of these resources will help others better understand what you are going through.

12. How do you know you are doing too much?  How do you decide what you have to give up?  Bluffton, OH

It is difficult to prioritize and sometimes the trivial things take the place of the important things. If I said, “you only have one week to live," what things would you do? These are your top priorities. Once you get your priorities straight, it is easier to allocate time appropriately.

13. How do moms with lupus deal with the symptoms of lupus and caring for their children?  Seven Springs, NC

By asking for help! It is almost impossible to do it all without any help. I learned when my girls were little that they were very helpful, when they understood that, "Mommy needs your help." Set up some tasks that are age appropriate and let them help. Also, ask friends and other family members to help you. I've always found it hard to ask for help, but finally learned that people really don't mind. On days when you feel well, you can offer to help others.

14. I'm having a tremendous amount of difficulty managing my stress and symptoms and my relationship with coworkers.  How do I create a positive work environment when they don't or don't want to make the effort to understand that lupus is unlike anything they will ever encounter?  Recovering from gall bladder surgery is a cake walk compared to dealing with stress induced symptoms brought on by trying to keep up with everyone else, manage a full time graduate class load and have a family.  Can you have Lupus and do it all?  Loveland, CO

Wow, you are trying to do it all! That sounds like an awful lot for anyone, much less someone living with lupus. You might want to re-evaluate what you have on your plate right now and decide if you really feel it is realistic. When you try to do too much, that only adds to your stress and can contribute to the disease flaring, which then creates even more stress.

As for co-workers understanding, I don't know that they ever will. It can be frustrating for you, but by letting go of that expectation, you might be happier. For those who might be interested, I've mentioned lots of resources that you can provide to them.

15. I have both a lupus and Fibromyalgia diagnosis. The illness is what is bringing the stress to my life. Being sick makes it harder to manage my special needs child, which lead to my divorce, poverty from my inability to work for the past 2 years, also the frustration with not having a real support team because most people even the kindest cannot handle the helplessness they feel. How do you recreate a life?  Las Vegas, NV

It sounds like lupus and fibromyalgia have complicated your life in very challenging ways. I believe that to recreate a life, you must do it one tiny step at a time. Look at each area of your life and decide which area is the most important for you to begin working on. Once that area is selected, write a goal that you want to accomplish. Next, take that goal and break it down into small, realistic steps. Perhaps one of your goals is to get financially stable. Your first step might be to go online and find out what resources you have locally. The next step might be to begin making the calls. It is important that each step have a deadline, so that you begin taking the steps. Each time you take a step, celebrate that accomplishment. This will help you build momentum to get more done. 

I applaud you for sending such an honest and difficult question. You have started to reach out for help, now you must continue. Each day do one tiny thing that moves you in a positive direction. Eventually, these small steps will lead you in a positive direction. You may not see it at first, but when the steps add up, you'll begin to feel the change. I wish you the very best.