When you or your family member has a blood or bleeding disorder, building a support network is important. Having a network of friends, family members, and others to give social and emotional support can lead to a better quality of life. Knowing who you can turn to and ask questions, discuss concerns, learn information, and find resources is critical to your well-being. When you have a strong network of support, you will be better able to manage life with a blood or bleeding disorder.
This section of developing a support network covers the following:
Tips for Developing a Support Network
Support Outside of the Community
Tips for Developing a Support Network
It is important when managing a bleeding or blood disorder to have a strong support network. Having a support network can improve well-being, lower stress, decrease feelings of fatigue, and lessen loneliness. If you do not yet have a support network, it can be hard to know where to start.
Here are some tips on developing a support network:
Look at the people already in your life including friends, family, and other members of your community. Are there people in this group you can count on? Make a list of those who you feel you can reach out to and the role they play in your life.
Make a list of areas where you need support. You might need someone who you can call to go out to coffee. Maybe you need someone to help you process what you’re going through like a mental health provider. Having a list of needs can help you decide how to grow your support network and where to reach out.
Attend events where you can meet people who can help support your areas of need. Ideas include attending a workshop, taking a class, attending a faith or spiritual gathering, going to a community meeting, attending a career fair, going to the gym, or participating in volunteer activities.
Speak with a professor or an advisor about resources on campus to connect you to others who share similar interests.
Seek out professional help. This could be finding a mental health provider, speaking with a faith or spiritual leader, or finding a mentor. You do not have to do this alone!
If you want more information about emotional health, please go to the section on Emotional Health.
If you want more information about finding mental health resources and support, please go to the NBDF Mental Health Resources List.
Local Support
Connecting with others in the blood and bleeding disorders community is important and helpful because they understand what you are going through. People in the bleeding disorders community can be a source of support and information. Below are ideas on how to get connected and find local resources.
HTCs offer comprehensive care, which addresses your physical, emotional, psychological, educational, financial, and vocational health. An HTC is a great place to go for support.
If you want more information on finding an HTC near you, please go to the CDC HTC Search Directory.
Local chapters of the NBDF and other bleeding disorder organizations can help you connect with others who understand what you are going through. They hold gatherings where you can learn more about bleeding disorders and connect with others in the community. Events can range from activities that bring experts to you to fun weekends spent getting to know others.
For more information on finding a chapter, please go to NHF Chapters.
Camps for the bleeding disorders community offer another great way for you to connect with others your age. People at camp share similar experiences growing up and build trust, understanding, emotional support, and friendship with their peers. You can participate as a camper, a camp counselor or other staff member depending on your age.
For more information about camps by state, please go to the NHF Camp Directory.
For more information about what bleeding disorder camp is like, please go to Camp Life.
National Support
The National Youth Leadership Institute (NYLI): NYLI is the NBDF’s leadership training program for young adults (ages 18-24) in the bleeding disorders community. NYLI provides young adults with leadership opportunities to encourage personal growth, effect change, and empower a new generation of leaders.
For more information about the National Youth Leadership Institute, please go to About NYLI.NBDF’s Annual Bleeding Disorders Conference (BDC): BDC is NBDF’s annual signature event. It is an educational conference for everyone in the bleeding disorders community: community members and their family, healthcare providers, and chapters. You will experience quality educational sessions on topics relevant to all types of bleeding disorders, informative exhibitions, and engaging networking opportunities. The event creates an environment to grow your knowledge and skills and develop your support network.
NBDF’s Victory for Women Website: Victoryforwomen.org celebrates the voices of women in the bleeding disorders community and offers a space to connect with other women through story sharing and information gathering. It is a place where women in the community can express themselves, ask their questions, share their challenges, and above all, celebrate the victory of standing up and being heard.
For more information about Victory for Women, please go to Victoryforwomen.org.
Online Communities:
NBDF’s Social Media Networks: Like the NBDF Facebook page and follow the NBDF Twitter page to stay linked to all the helpful resources and up to date on activities.
HemAware: Produced by NBDF, HemAware is an online and print magazine about bleeding disorders. The magazine covers topics about research and treatment, insurance, management of bleeding disorders, advocacy, and more. For more information about HemAware, please go to HemAware.
NBDF’s Victory for Women Website: Victoryforwomen.org celebrates the voices of women in the bleeding disorders community and offers a space to connect with other women through story sharing and information gathering. It is a place where women in the community can express themselves, ask their questions, share their challenges, and above all, celebrate the victory of standing up and being heard
Support Outside of the Community
It is helpful to find sources of support outside of the blood and bleeding disorders community, too. This could look like sharing your experiences with a trusted friend or educating your neighbor on your disorder so that you have someone you can count on if you need help.
Disclosure
Throughout your life, you will have many opportunities to discuss your blood or bleeding disorder with others. Telling people about your disorder can be daunting. You may be worried that you will be treated differently once people know. Below are some things to think about when planning to disclosure your disorder.
What to consider when disclosing your disorder:
Different people need different amounts of information. You may want to disclosure more about your disorder to your school, workplace, or close friends. Others may need to know less information. Remember, it is your choice how much information to share.
It may be helpful if friends, family members, or teachers know about your disorder. Talking about your disorder may help you cope and find people that can support you.
There could be different reactions to the information. Some may react positively while others may be concerned and worried. Unfortunately, some people may not react to the information well. They might become upset and make unfair, biased, or hurtful remarks. These kinds of reactions can happen because many people know so little about blood or bleeding disorders or blood-borne viruses. This may stem from preconceived ideas or ignorance and prejudice. If this happens, remember it is not a reflection on you and you are not responsible for their negative reaction.
Choose a good time and place to tell someone about your disorder. Having sufficient time to talk and being in a quiet place makes it easier to talk openly and safely.
For more information on disclosing your bleeding disorder, please go to Disclosures and Life on Campus.