I just read an article about programs at The Gathering Place in Cleveland, Ohio that help children cope when a family member has cancer. The Gathering Place has a variety of good programs that help not only the person with cancer, but also the whole family. When one person in a family becomes ill, it affects every member of the family, and changes the dynamics of the family as a whole. This particular article was about cancer, but this is true for any illness or injury.
If you have chronic pain or illness, you have likely noticed that people treat you differently. Maybe they tiptoe around you, or leave you out of the loop, or think you are faking. There are many other possible ways that you may be treated by others who aren't sure how to relate to you now. This article included helpful suggestions for how to discuss your cancer with your children (and other people). These suggestions, with a few minor changes, are good advice for any of us, in relating to our loved ones about our illness. Here are nine suggestions from the article, the parentheses are my additions :
1. Use the word "cancer" (or Fibromyalgia, or Sjogren's Syndrome, or whatever it is you have. Their point is that cancer is a very emotion-laden word, using it will help to normalize it. My point is that by using the name of whatever you have you will help to educate people about it.)
2. Don't try to hide it. (If it affects you, it affects them. Trying to hide what you are going through leaves them out of your loop.)
3. Be specific about which body part(s) is (are) affected.
4. Ask them what they think cancer (Fibromyalgia, etc.) is. This gives you a chance to correct any misconceptions.)
5. Explain what will happen next.
6. Tell them there will be good days and bad days.
7. Reinforce that you still love them.
8. Don't make promises you may not be able to keep.
9. Don't limit it to one conversation.
I would add a few other thoughts: Keep the doors of communication open. Let others express their thoughts and feelings about what is going on. Let them know you recognize that your illness impacts their lives, not just your own. Express your appreciation of their support and for all they do for you. The key is not to dwell on your illness, but don't be secretive about it, either.
The article was titled 'Helping children cope with a loved one's cancer', published in the spring 2012 issue of Balanced Living magazine.