Husband (39) newly diagnosed
Hi all! I'm glad to be finding places to help find answers to questions. My husband was just diagnosed, at 39, with Systemic Lupus. I'm an veteran with the arthritis foundation, Juvenile Rheumatoid since age 7, so I went there first, then found some of these forums. I've requested a ton of info from lupus.org, but didn't think to ask for info on explaining this to our children, 10 & very young 7. Anyone who can point me in the right direction would get a great big cyber hug. Thanks!
Hi Leah Angel:
This is a very common problem. How should you explain lupus to your children? For young children, less of an explanation will be possible, perhaps only including some reassurance that Daddy willl be OK. With older children, explanations can be more detailed. Encourage them to ask questions. If your children really don't want to ask you anything, they won't. But they know they can if they want to. Upsetting thoughts kept inside can be destructive for them and not having information that they want can be frustrating.
Questions from older children will probably be more direct and more specific. Discuss your husband's illness, symptoms and medications to them in an understandable way (bearing in mind not to overwhelm them). If the discussions are handled properly, they will be very helpful for your children. Open and honest discussions can lead to great feelings of closeness between you, your husband and your children.
The way you answer questions will depend upon the age of your children. Also, the amount of information requested and given will also depend upon the age of your children. Provide answers specifically for the questions. Don't go into too much detail, unless your child asks for more information. Try to determine what your child really wants to know.
Be careful that you don't frighten your child... Be careful of what you sayand how you present the information. You may know very well what you mean, but always be aware of how what you say will be interpreted in your child's head? Try to think about how you would want your information received. You want your children to share their feelings about their father's lupus with you. Showing that you and your husband accept, understand and are willing to make changes because of his lupus, and that you don't mind (and even welcome) questions about it, will keep the lines of communication open.
Frequently, children will ask you (or think about) whether their father is going to die. They may see him in bed a lot, very tired and taking a lot of medications. They can tell he is no longer able to do what he normally used to do. He may be having difficulty "getting around" adequately andu may need to make frequent doctor's visits. Reassure them that he is not going to die. It might be helpful to take them with you to speak to a professional (your physician or your child's pediatrician, for example).
If your husband's lupus physically prevents him from being a "good parent" as he'd like to be and he is no longer able to take the children somewhere, or that he can't do what he promised. Understand that it is normal for children not to want to understand things when they're upset. Start by emphasizing that he has no choice, and if he did, he would much rather keep his promises. Remind your children repeatedly that there may be times when he won't be able to do much. Try to work out some ways that some pleasant time can be enjoyed together when he does feel up to it. Spending "quality" time with your children (special time where you are all really sharing feelings and activities) is more important than "quantitiy" time (how many minutes or hours he's physically with them).
If your husband spends quality time, talking with your children, and being open and receptive, you will all find that these times are the most important ingredients in helping your children handle having a parent with lupus.
I hope that I have been helpful to you. I wish you and your family the best of luck. Stay in touch, we are here to offer you support, information and understanding
Peace and Blessings