Sunday, March 25, 2012

Guilt and Parenting

This is a topic that most people with any chronic illness think about.  I have a lot of guilt about being too sick to do many things that I want to do with my children.  I cannot always go outside and run around with them, or make them dinner, but I try to focus on what I can do for them.  I can always listen to them, hug and kiss them, tell them how much I love them and how proud I am.  I can help them with homework or studying, I can be a shoulder to cry on, or cheer with them when they have achieved an award.  My being ill has also taught my children empathy, and understanding. It has also taught them to do so many things on their own; they can do laundry, make lunch, vacuum the family room, clean the kitchen, organize their own rooms.  They will grow up to be wonderful men, that have a deep love and respect for everyone, and they will be able to take care of themselves and others.  It has made us stronger as a family, and has taught us that everyday is precious.

Parenting and Lupus

(It is spring when I am writing this but I thought this article will help no matter what time of year you may be reading this.) 
Parents struggle to manage demands of lupus and their households
As the days get shorter, most people look forward to the cooler months and the flurry of special occasions they bring. From Halloween to New Year's, it's a festive time of year-the season for family get-togethers, Thanksgiving turkeys, and social invitations. And while these celebrations can be fun and exciting, they can also be very stressful. For parents with lupus, that can spell trouble.
"This has always been a very hard time of year for me," admits 39-year-old Valinda Mitchell from Orting, WA. She was diagnosed with lupus in 1988, a few months after the birth of the first of her four kids, now ages 12 to 17. "All of my major flares always happen around this time of year because of the stress from the holidays. It starts around the time the kids go back to school and doesn't let up until after New Year's."
Mitchell's experience is not unique. Parents with lupus who are juggling several responsibilities may feel overwhelmed by the added demands of special events at their kids' schools and seasonal activities such as trick-or-treating, big family feasts (complete with those dreaded family squabbles), and holiday gift shopping. Staying serene is a real challenge-if not downright impossible-and these parents run the risk of exacerbating their lupus symptoms if they run themselves ragged.
Thomas J. A. Lehman, M.D., chief of the Division of Pediatric Rheumatology at the Hospital for Special Surgery, and professor of clinical pediatrics, Weill Medical College of Cornell University in New York, believes that lupus can be managed during the holidays, with this caveat: "People with lupus should remember not to overextend themselves."
The good news is that the strategies that can help people with lupus cope with holiday stress can be beneficial year-round.
Don't Worry About "Carrying Your Weight"
Lorrie Frazier, a 33-year-old licensed practical nurse in Hamilton, OH, would agree. She received her lupus diagnosis in 1997 during her second pregnancy, after years of experiencing flu-like symptoms. Frazier is now the mother of two children and three stepchildren and has been married for nine years to her husband, Don. Over the years, Frazier and her family have found ways to make the holidays less hectic.
"Flexibility is very important," she says. "Break large family gatherings into smaller get-togethers. You don't necessarily have to meet on the actual holiday. Make sure your extended family understands why you can't go to five different places on Christmas Day."
Moms and dads with lupus often find keeping up with their kids' activities challenging at any time of year, and it can get tougher around holidays. Frazier, for example, is forced to miss out on many events because she feels too ill to attend. "I feel really bad about that, about not being able to be there."
Mitchell also gets frustrated with the impact lupus has had on her family life. "I feel like our lives revolve around my doctors. It makes it really hard. Sometimes I just want it to stop," she says.
According to Lehman, these feelings are normal. "The impact of the diagnosis of lupus on a family is profound," he says. "Every family member is affected."
Robert H. Phillips, Ph.D., a psychologist, founder of the Center for Coping in Hicksville, NY, and author of several books about lupus, says that lupus can be "devastating" to family relationships, and that parents with lupus often feel guilty. "They experience guilt because they don't think they're 'doing the job' or 'carrying their weight' as a good parent or spouse."
To cope with the chaos that lupus brings, Mitchell and her family try to keep things as normal as possible. "We all just take it one day at a time and do what we can. Yes, I'm sick, but my kids still have sports and music lessons and their friends. We all have things besides my illness. We try to create balance and not dwell on what's not positive."
Talk About It
Phillips emphasizes, "Good communication is the key to keeping family relationships intact, and even stronger, despite lupus. Virtually any problem that a person may encounter can be handled better with a support system with good communication skills."
Lehman suggests involving the whole family in finding strategies to handle the impact of lupus. "Everyone must be involved in recognizing the illness and making adjustments, both for the benefit of the family and for their own benefit," he says. "While it is very important that the family make the adjustments necessary to allow for the proper care of the person with lupus, everyone in the family must also take into consideration how they are going to adjust to meet the needs of the family members who do not have lupus. Everyone will have to sacrifice for the care of the person who is ill, but there should be sacrifices for the care of the well family members, too. This applies whether the affected family member is a sibling, parent, or child."
Both Mitchell and Frazier agree it's critical to keep family members engaged and informed of what's going on. "Don't try to shut them out of your bad days," says Frazier. "If they know you have good and bad days, they know where they can help, and they won't be bitter. Don't hold anything back."
Mitchell also holds family meetings to talk about her lupus, and school counselors offered her kids assistance when she was hospitalized with a life-threatening flare.
"It was horrible," she recalls. "When I was finally able to come home from the hospital, my youngest daughter didn't want to go to bed because she thought I would die if she went to sleep. To this day, she is very clingy and worried about me. It's a tough thing for a family to deal with."
Phillips says fear is a very prevalent emotion in families with lupus. "[There is fear about] what symptoms will be encountered, what the prognosis is, what side effects the medication will cause, and what impact lupus will have on the family."
In his book Coping with Lupus, Phillips suggests that parents with lupus encourage their children to ask questions and talk about their feelings. "Children, regardless of how old they are, may be especially vulnerable to the stresses and fears that occur when a family member has a chronic illness."
If your kids aren't yet willing to discuss the subject, Phillips recommends letting them know they're always welcome to. "Once your children know that they have the option of talking to you freely, they can decide what they wish to discuss....If you show that you accept lupus and that you welcome questions about it, this will greatly benefit your relationship with them."
It's a Family Affair
Keeping the communication pathways open for kids and partners can definitely help around the holidays. It's important for a parent with lupus to ask for help when needed, and to allow others to help when they offer.
"I ask for help more than I used to, that's for sure!" says Mitchell, who is also busy running an embroidery business. "I try to plan things in such a way that other people can help out and I can delegate."
That includes redistributing chores to help relieve the year-round stress. "It started out with vacuuming," Mitchell recalls. "I have a big house, and after I did the vacuuming, I would become so sore and stiff, I had trouble moving and walking for several days afterwards. It just got to be too much."
So, a couple of years ago, she delegated more tasks to her husband, John, and her children, who she says are quick to assume her duties on top of their own, when necessary. "Even my 13-year-old son is very good at making dinner for everyone when I'm too tired or sick to do it."
Learning to say "no" is also crucial to stress management. It's a skill that Mitchell had to learn for the sake of her health. "I make things as simple as possible. Take charge of what you can and learn to let go of what you can't."
Frazier's husband and kids also jump in and support her when necessary. When she started to lose her hair, her husband and son offered to shave their heads in solidarity. She was also deeply touched by a conversation she had with her oldest child: "My 18-year-old daughter said to me, 'You took care of us; now it's time for us to take care of you.' "
While support from family members is vital, it's also important that people with lupus find coping strategies that work for them. Writing in a journal, meditating, or taking "me-time" each day are just a few ways to unwind.
For many, spirituality is also a rock in times of crisis. Frazier credits her faith with helping her make it through the tough times. She adds that although life with lupus can be very difficult, she counts herself as lucky because, rather than falling apart under the pressure of life with lupus, her family has become stronger and closer. "Just knowing that I have my family's love and the knowledge that God is in my life, I cope." Then, after a moment, she adds: "We cope."
Sound Advice
Robert H. Phillips, Ph.D., a psychologist, founder of the Center for Coping in Hicksville, NY, and author of several books about lupus, offers these tips for busy parents with lupus:
  • Develop and maintain a more positive mental attitude. For example, think about situations you're feeling negative about. Ask yourself how you could think about these more positively. Reflect on someone whose attitude is positive, who you admire, and ask yourself what that person would think about in your situation. Focus on realistic, positive things to keep you going in a healthier direction.
  • Use relaxation techniques regularly. Listen to relaxation CDs, practice yoga, or meditate to keep stress levels as low as possible.
  • Get plenty of rest, but don't use rest to escape. Resting is important for health reasons, not because you want to avoid dealing with your life.
  • Minimize worrying, especially about things that are out of your control. Ask yourself, "Is what I'm worrying about going to help me generate solutions to my problem, or give me ideas on what to improve?" If so, plan to work on self-improvement. If not, force yourself to think about other things, things you can do something about.
  • Enjoy the presence of your support network-the family members and friends who care about you.
  • Schedule time for things you enjoy. This is not a luxury; it's a necessity. There should always be a healthy balance between things you have to do and things you want to do. Make time for hobbies, being with people you like, and catching up on enjoyable phone calls.

When you have lupus, taking care of yourself can be hard enough. If you're a parent — dealing with rheumatology appointments on top of dirty diapers and school bake sales — it may quickly become overwhelming for everyone.
"A parent's lupus will have an impact on their kids," says Robert Katz, MD, a rheumatologist and associate professor of medicine at Rush Medical College in Chicago. "It's a disease that affects the whole family."
There are techniques that will help make parenting with lupus easier, he says. Many parents with lupus — and their children — learn ways to thrive despite the illness. Here are some tips for parents with lupus, followed by advice on how to talk to your children about your condition.

Tips for Parenting with Lupus

  • Make your own health a priority. As a parent with lupus, you may feel guilty about prioritizing your own wellness — shouldn't your kids always come first? But it's not selfish. If you wear yourself out taking care of everyone else, you could wind up sick with a lupus flare. "You can't be superwoman all the time," Katz says.
Remember the advice you get on the plane: in emergencies, put the oxygen mask on yourself first, then your kids. So get enough rest, reduce stress, and see your lupus doctor regularly. "If you focus on taking care of yourself first," Katz says, "you'll be better able to care for your kids."
  • Create new traditions with your children. If you’re a parent with lupus, you might not be able to do all the things you used to do with the kids. Don't get discouraged. Instead, connect with your children through new family traditions. Make them low-stress, so you can participate even when you're feeling crummy. Try to set aside a night each week for a family movie or board game.
  • Let your family know how you're feeling. As a parent with lupus, one day you might feel terrible and the next day you might feel pretty good. It can be hard for your family to keep up. Try using a number to express how you feel, with 1 being poor and 10 great. Then write the number on a white board in the kitchen when you get up, says Dawn Isherwood, RN, house educator at the Lupus Foundation of America. Your family will know how you're doing at a glance and can adjust their expectations.
  • Stop feeling guilty. Parents with lupus often feel like they "should" be doing more. Some blame themselves for their lupus symptoms, feeling that if only they tried harder they would be more active, "better" parents.
When you start to feel this, ask yourself: would you think this way if you broke your leg? Or had cancer? Lupus is just as real and often just as debilitating. Going through life feeling guilty and self-critical won't help you. What's more, it won't help your kids either.
  • Be willing to say no.There will be times when you'll be too sick to do things that your kids want or expect. It will be hard to disappoint them and they might be angry. Acknowledge their feelings and tell them why you had to say no. "If you can explain, even grumpy and cranky teens can be more understanding than you expect," says Katz.
  • Parenting with Lupus: How to Get Support

    If you're a parent with lupus, you're going to need help from a lot of different people. Here are some pointers on how to get it.
    • Have scheduled help. Don't get extra help on a casual, as-needed basis. Build support into the week. Maybe it means getting a nanny. Maybe it means asking your sister to take the kids grocery shopping once a week. Maybe it means hiring a 12-year-old girl from the neighborhood to be a mother's helper after school. However you do it, parents with lupus need to have regular, scheduled help, Katz says.

      "You must have time to yourself that you can depend on," says Katz, "time when you can take a nap or take a walk and know that your kids will be OK."
    • Plan for emergencies. Most people with lupus do quite well with treatment. Even so, parents with lupus should all have a disaster plan in case they ever get seriously sick or hospitalized, Katz says. Make sure close friends and family know what they would need to do. Not only will a plan help things run more smoothly if you have a health setback, it will reduce your anxiety now.
    • Don't let your kids get overburdened. If you have lupus, your kids will probably have to help out more around the house than they would otherwise. That's to be expected. Just be careful not to put too much on your children's shoulders. "You don't want your kids to grow up feeling like a semi-parent," says Katz.
    • Consider seeing a therapist. Being able to express your concerns to a therapist — about everyday hassles as well as serious health anxieties — will help you feel better and more in control. A therapist can teach parents with lupus practical techniques to manage the day. Family therapy can be a good idea too. It will allow your whole family to express themselves freely in a safe, controlled environment.
    • Strengthen your relationship with your partner. If you're raising kids with a spouse, the two of you need to have a solid relationship. Inevitably, your lupus will put extra stress on your partner. It’s important that you not let your relationship deteriorate so that you're the "sick one" and your partner is the caretaker, Katz says. "Even if you're worn out, there are still ways you can support your spouse," he says. "Give him or her a chance to talk about their day or their stresses. Do little things to help your spouse feel better."

    Parenting with Lupus: How to Talk to Your Kids

    You might feel uncomfortable talking to your kids about lupus. Lupus is unpredictable, and you may not be sure of your health in the long-term. It's tempting to avoid the subject. But that won't work for long. Even young kids will sense that something is wrong. If you don't talk about it, your kids might not ask — but they might worry in private.
    As a parent with lupus, the best you can do is reassure your kids, realistically, about your health. Here are some tips for the conversation.
    • Explain the basics. The specifics depend on your kids' age and your health. Talk about how lupus affects you, says Lisa Fitzgerald, MD, a rheumatologist at the Lupus Center of Excellence at the Beth Israel Deaconess Medical Center in Boston. It might make you tired, achy, forgetful, and cranky. Stress that you’re getting good treatment and most people with lupus do well. Make clear that lupus is not like cancer — it doesn't get worse and worse. Instead, it's unpredictable — you'll have good days and bad days.
    • Let them ask questions. Don't feel obligated to tell your kids everything about lupus, Katz says. Let your kids guide the conversation with their questions. If they ask about the scary stuff — like whether you might die — answer them in a reassuring way. But you're not obligated to talk about unlikely worst-case scenarios if they’re not asking, Katz says.
    • Ask them what they know about lupus. You really can't predict what your child might have picked up about lupus, Katz says. Your son might wonder why you seem so rundown compared to apparently healthy celebrities who say they have lupus. Or he might be terrified because he assumes lupus is a death sentence — all because a friend told him his grandmother died from it 20 years ago. Find out what they know and correct any misconceptions.
    • Make it an ongoing conversation. When your discussion is winding down, make clear that it's not over. Tell your kids that they should come and ask you questions as they think of them. It might take some time for them to process the information and figure out what they want to know.


  1. Parenting these days is a task in many ways because of the overwhelmingly advanced mind sets and ideas that the new generation child portrays. It is necessary that the whole family must not have a secret to each other for the continuation of a happy living family. Mrs. Lupus had illnesses she suffered but I think it is not a hindrance anyway to be a good parenting to their child. It is nice to read your blog for spending time for your children.

    1. Thank you Greg for taking the time to read and comment on my blog. Best wishes.

  2. I really enjoyed reading your informative and inspiring post. Thanks for creating masterpiece of information on web through sharing this valuable post.