Sickle cell disease: Challenges and how to overcome them

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You and your teen may face setbacks when using the skills you have learned from the program. Learn some of the common reasons for setbacks and find tips to help you prevent or address setbacks.

Key points

  • As you have been learning new ways to help your teen manage sickle cell pain, you may have had success in some areas but faced challenges in others.
  • Common reasons for setbacks or challenges include having negative thoughts or feelings about being able to learn a new skill, experiencing major events that take attention away from learning a new skill or not finding a skill helpful the first time you or your teen tries it.
  • Remember that it can take a few attempts before you see the benefits of a new skill.
  • If your teen faces a setback, try to identify any thought barriers, be flexible with the strategies you learned and encourage relaxation strategies to manage stress.

If you and your teen have been following the iCanCope with Sickle Cell program by completing one module per week, you have now been working for about two months to learn new ways to manage sickle cell pain more successfully. While you have probably been very successful in some areas, other things may be more difficult to change.

Many parents have shared things like:

"He's been really good about dealing with pain on his own at school, but he forgets to take care of himself when he is with his friends."

"She doesn't have as much pain but still has trouble getting to sleep and will be grouchy when that happens."

"She was using relaxation strategies, but I'm not sure if she is anymore."

"It is really hard to stay on schedule when friends want to go to late movies or just hang out late. I want to let her have fun, but I know how much staying up late throws off her system."

Managing setbacks

There are several common reasons setbacks can happen or teens can continue to experience areas of difficulty.

Some teens may have negative thoughts about their abilities to learn the skills and might have believed certain skills were just too hard to master.

Other times, certain events get in the way of learning new skills. Major events such as the illness of a grandparent or the loss of a close friendship can be upsetting and take attention away from learning the skills to manage pain.

Lastly, a new skill may not seem helpful the first time someone tries it. Sometimes, it takes a few attempts before you see the benefits of a new skill.

Problem-solving tips

Identify thought barriers

Amanda's mother had a headache and wanted to stay home from work. She thought to herself, "I just can't do it." However, negative thoughts can keep you from learning helpful tools.

Because of this, Amanda's mom tried thinking differently. What if going to work when she was in pain was something she could do to help her daughter? Doing this would give Amanda a positive model for coping with pain. This positive thought made her more willing to try going to work.

Be flexible when using the strategies you have learned

When graded activity helped Carlos begin riding his bike regularly again, his dad worked with him to set up a system for gradually returning to baseball. Carlos's dad agreed to take him and a friend to a movie on weekends when he had gone to practice three times during the week.

Remember the role of stress!

When Joseph's family moved across town, his mom remembered to prompt him to use his relaxation more often because she knew the move would be hard for him.

Last updated: March 22nd 2024