Disclosure: Should I Tell?
Most middle and high school students want to fit in and have an active and fun social life. But feeling different around friends and classmates can be hard. Some kids with a bleeding disorder — or any other chronic condition for that matter — may want to keep their illness a secret. However, hiding a condition can cause problems as well. In this next section, we’ll cover some important issues:
- The benefits of disclosing your condition
- Who really needs to know?
Middle and high school years are a time when children want independence while they find their own unique identity. Most adolescents want to be like other teenagers; they don’t want to look or act differently or miss out on activities because of an illness. Fitting in is a high priority for a teen.
It’s a normal part of adolescence for children to become increasingly idealistic about what they should look like and how they should behave. They may also worry about fitting in or being bullied if anything makes them seem different from the rest of their peer group. To try to fit in with peers, adolescents with bleeding disorders may deny their illness by concealing bleeds and the need for treatment.
Hospitalizations, medical treatments, and bleeding episodes have the potential to interfere with activities, limiting social experiences. This may lead an adolescent to resent their illness because it sets them apart from their peers. They may take their resentment out on parents or physicians by being rebellious or defiant.
Coping with denial and resentment can be challenging at any age, but especially during adolescence. Understanding where your teen is coming from will help your son or daughter develop his or her unique identity while helping them successfully manage their bleeding disorder.
Tips to Help Your Child
- Knowledge is key. Help your child learn about his or her bleeding disorder. Be certain your child knows how to express his or her medical, physical, and social needs to others. Help your child learn how to set appropriate limits on physical activity with friends.
- Encourage your child to express his or her feelings about the bleeding disorder, its treatment, and any other body issues. Talk to your son or daughter about how the bleeding disorder may impact both daily living and plans for the future. Discuss problems with peers and how to handle awkward situations.
- Encourage your child to socialize. Socializing with other people with bleeding disorders can be a beneficial experience. Kids can connect in person through camp, chapter events, the National Hemophilia Foundation Annual Meeting, Washington Days, and other events. They can also explore different ways to connect with others online.
- Get professional help for your child. If your child is showing any signs of depression or is having difficulty dealing with his or her bleeding disorder, seek help from the staff at the Hemophilia Treatment Center (HTC). Your child’s HTC can be a good place to start to find mental health professionals in your area who treat depression and other emotional issues in children and teens.
- Discuss ways to manage stress. Know the signs of stress and teach your child strategies to successfully manage stress.
- Practice positive conflict resolution. Is your child acting out? Practice positive conflict resolution by listening, being flexible, clearly stating needs, and exercising respectful negotiation.
Online Information and Sharing
Children are part of a new generation of health care consumers. Teens can get information on treatments, medications, and find answers to many of their questions online. The internet has revolutionized the way people with bleeding disorders are able to interact and build a social support community. Many people with bleeding disorders keep in touch using methods that include e-mail, instant messaging, texting, Twitter, Facebook, and Skype. Technology is a great way to connect with friends and can help your child feel less isolated.
The Internet can be an invaluable tool as long as you take a few precautions.
Here are some tips about the using the Internet to share with your child:
- Don’t believe everything you read online! It’s tempting to find answers to your health-related questions online. However, the Web is not like a school textbook where all the facts have been checked for accuracy. Anyone can post anything online and there can be misleading information. Always refer to your health care provider for the most accurate information related to your health.
- Think before you post. Sharing intimate details now can cause problems in the future. Information you post in chat rooms, blogs, on Facebook and Twitter, or other sites for family and friends to see may also been seen by the general public, including potential employers.
- Do your research. Be careful about sharing personal information, including information related to a bleeding disorder on social sites and chat rooms.
- Read the
FAQsections to learn as much as possible about a site before you post your information.
- Read the user agreement carefully.
- Read the
- Block or ignore unwanted communication. Most chat rooms or instant messaging programs allow you to block those who are not on your buddy list. Carefully think about who you accept as a friend on Facebook and other social networking sites.
Throughout your child's life, you will have many opportunities to discuss your child's bleeding disorder with others. Telling people about your child's bleeding disorder can be daunting. You may be worried that you and your child will be treated differently once people know.
Helping Your Child With Disclosure
As your child grows, be sure to include him or her in this decision-making process. As children mature, they have an increased need for privacy, which may influence their decisions about telling peers. Some may choose to disclose to all their friends and classmates, while others may want to tell only a few people or no one at all. Some children want to be known for their talents and accomplishments, not just their bleeding disorder, while others will enjoy educating people on their disorder. At this age, either choice is appropriate.
Different people need different amounts of information. It’s important to inform the school, teacher, and coaches about your child’s bleeding disorder. A peer may just need to know that your child has a bleeding disorder and what it means. Help your child know that getting used to talking about their bleeding disorder with peers can help them feel more comfortable with themselves, their disorder, and their treatment.
It is helpful if friends and family members, neighbors, and caregivers know about your child's health condition. They can help you and your child cope with the ups and downs of living with a bleeding disorder. They can be a support system for your entire family in times of need.
Of course, different people will have different reactions to the information. Some may find your news perfectly normal. Others may be concerned and worried about your child's health and future. Unfortunately, some people may not react to the information as favorably as we would like. They might become upset and make unfair, biased, or hurtful remarks. Sometimes they stop contact with you and your child altogether.
These kinds of reactions can happen because many people know so little about bleeding disorders or blood-borne viruses (for example, what they are, how they’re transmitted, and how they can affect someone). This may stem from preconceived ideas or ignorance and prejudice. If this happens, remember, it’s not a reflection on you or your child, and you’re not responsible for their reaction.
Helping Your Child Prepare to Tell Others
- Teach your child about his or her bleeding disorder. Be certain your son or daughter has accurate information before he or she tells others.
- Help your child practice what he or she is going to say. A social worker or counselor at your Hemophilia Treatment Center (HTC) may have some pointers for you.
- Think through all the possible responses a person might have when hearing that your child has a bleeding disorder. And think about how your child might react in turn. This will help you and your child figure out what other information might need to be shared.
- Encourage your son or daughter to choose a good time and place to tell someone about the bleeding disorder. Having sufficient time to talk and being in a quiet place makes it easier to talk openly and safely.