Family Feelings and Support
By now, your rheumatologist has explained to you that your child has one of the rheumatic conditions, such as:
- Juvenile Rheumatoid Arthritis (JRA)
- Scleroderma
- Systemic Lupus Erythematosus (SLE)
- Dermatomyositis
They have also explained that it is chronic. That means it will last a long time even though it may periodically not cause problems or be noticeable.
Over time, it will be natural for you to have a lot of questions and many different feelings. You may experience such feelings as sadness, denial, anger, grief, fear, guilt, frustration and loneliness. For example, you may feel sad about not having a "perfect child" anymore. You may feel guilty thinking that in some way, you may have caused your child's condition. You may also feel angry, afraid, and helpless that your child's future may be changed in some way. Some people feel they need to be protective or permissive. Some families question their ability to continually meet all of the mental, physical and financial needs presented by your child's disease. It is normal to feel anxious about those things.
Many people find it helpful to become aware of how they feel and to express their feelings as a first step toward feeling better. Expressing your feelings is also a first step toward getting adjusted to living with your child's condition in a positive way. Your personal responses to your child's illness may play a major role in his / her adjustment. No matter how you feel, it is okay to feel that way. There are no right or wrong feelings for a person to have.
It may be helpful to share your feelings with a spouse, "significant other," close friend or religious leader. Sometimes feelings change when you can talk them out, even though they don't change right away. Your feelings in all likelihood will change with time. They may become less strong or even just go away.
Your child will also need extra support and reassurance from you and other family members to help with their feelings and concerns. Many school-age children and teenagers worry about feeling different.
Brothers and sisters have many different feelings too. They may feel afraid of becoming ill themselves or afraid that they could have, in some way, contributed to his / her brother or sister's condition. Sometimes they might feel angry about the extra attention or special attention that their brother / sister is getting. Try to encourage all of your children to share their feelings with you. In turn, you can talk with them and share information and clear up any misunderstandings or questions.
If possible, try to spend individual time with each child. Sometimes brothers and sisters like to be included in things. For example, allow each child to help with therapy exercises, or bring them to a clinic visit. Remember, it takes time to adjust to all of the changes that are taking place. We believe strongly in family-centered care. When one family member is diagnosed with a chronic illness, it affects all the family. So we will work with and talk to the entire family.
The rheumatology team believes strongly in patient / parent education. Knowing accurate information about your child's condition and having proper instruction about how to best provide home care and treatment can help families feel more in control. Keep in mind that the staff is also here to help you work through your feelings, offer support and answer questions. If needed, we can also help in referring family members to appropriate specialized, individual, family and group counseling, as well as support services located in the community or the hospital.
The Arthritis Foundation also is a very good resource for education, advocacy and support. The Foundation has a special national council which focuses on meeting the special needs of children with arthritis as well as their parents. It is called the American Juvenile Arthritis Organization (AJAO). The telephone number of the local chapter is listed in the section entitled Community Resources. Be sure to ask your nurse or social worker about the local AJAO chapter.
The rheumatology center and the local Arthritis Foundation have worked together to provide a Family-to-Family Network. The Network offers families a chance to talk with each other about similar experiences or concerns. Many families find it helpful to talk with each other. Ask your nurse for one of the pamphlets about the Network.
For more information about the William S. Rowe Division of Rheumatology at Cincinnati Children's, please contact 513-636-4676.
