Fibromyalgia and Children
It's never easy when chronic illness affects a child. Although the focus of this book is on adults with fibromyalgia, the condition can also affect children, be it directly or when a parent has it. In either case, fibromyalgia can cause tremendous stress for a young child.
According to the Arthritis Foundation, approximately 10,000 children are diagnosed with fibromyalgia each year, most of them adolescents. Although the symptoms are similar, children generally have fewer tender points. Among adults who have fibromyalgia, most can remember early symptoms that began in their childhood.
Children who have fibromyalgia have many of the same symptoms that adults do — pain, fatigue, and difficulties concentrating. They may experience trouble sleeping and have restless legs syndrome. They may become depressed and anxious about being sick. They may also experience numbness, dizziness, and tingling.
As the parent of a child with fibromyalgia, you are your child's advocate. It is up to you to meet with doctors and health-care professionals to discuss your child's care and treatment. It is also up to you to speak with teachers and other adults about the impact of fibro on your child's ability to function and perform.
If your child has fibromyalgia, teach her how to cope by eating well, resting when necessary, and keeping stress at bay. Don't shield her from the reality of her condition, but do use simple words to explain it so she understands.
When Mom or Dad Has Fibro
Parenting has never been an easy job. But trying to parent when you have fibromyalgia can become extremely difficult, especially during bad flare-ups. You may not be able to do as much as you could before you got sick. And the fluctuating nature of the disease makes it hard to give your children the structure and consistency they need.
Children may be frightened to learn that a parent is sick. Some may worry that you will die. But don't be afraid to tell them about fibromyalgia. Let them know that you will have good days and bad days, that you won't die from it, and that you will still be available to them. Give them opportunities to discuss their fears and concerns, too.
If your children are old enough, tell them you have fibromyalgia in terms they can understand. Explain what the disease does and how it makes you hurt and tired. Let them know that you will have days when the pain is worse or better and that there may be activities you can no longer do. Encourage them to discuss how they feel about your illness so they have a place to vent frustrations.
Don't be hesitant to ask your children for help, if they're old enough to perform chores. Most children welcome the ability to contribute when given the chance. The additional responsibilities will even help foster their sense of responsibility.
Once your kids are older and start forming friendships, don't hesitate to enlist the help of other parents if you're having difficulty getting your kids to parties and activities. In return, offer to help out in other ways on days when you're feeling good. Again, the key is to speak up and communicate your needs. Don't sit back and expect that people will offer, even if they know you have fibromyalgia. Only you know the pain and difficulties you're experiencing.
Whatever you do, eliminate the guilt that comes with not being able to be the parent you might have planned to be. Children are skilled at sensing parental guilt and may use it to manipulate you. Keep in mind that no one, not even a healthy person, is the perfect parent. If you look around closely at other families, you'll see that parenting poses challenges for everyone. Yours just happens to be fibromyalgia.