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Dear Addy,

I have a bleeding disorder and two siblings who are unaffected. My siblings often ask how they can help or what they can do to support me. How do I share with them what I鈥檓 feeling and how to best support me? I don鈥檛 want to burden them with my issues.

Signed,

Supportive Siblings


Dear Supportive,

Talking about your experience living with a bleeding disorder is not a burden鈥攊t鈥檚 an important part of your life. Your siblings may also be feeling guilt or frustration if they can鈥檛 relate to what you鈥檙e going through. Here are some ways to share how you鈥檙e feeling and opportunities for them to support you:

  • Attend local events together. Many bleeding disorders organizations have events for families, including educational sessions for all ages. If you aren鈥檛 already connected with your local organization, reach out using HFA鈥檚 contact list.
  • HFA鈥檚 new Learning Central is an excellent resource for bleeding disorders basics, including facts and information that your siblings may not know or understand. Use this as a tool to talk with your siblings about living with a bleeding disorder.
  • Encourage your siblings to be involved with your doctor鈥檚 appointments and conversations about insurance. Learning about your health care will help them better understand bleeding disorders, as well as teach them valuable insurance information and advocacy skills for their own care.
  • HFA鈥檚 Coping with Sibling Issues Toolkit has information for the entire family. Share this with your siblings as a resource for understanding what you鈥檙e going through and managing their own feelings. The presentation titled, 鈥The Invisible Child: Understanding the Experiences of Siblings in the Context of Family Illness,鈥 may be particularly useful for your siblings if they are feeling left out or ignored.
  • Ask your siblings if they have questions about your bleeding disorder. Maybe there鈥檚 something they want to know, but don鈥檛 want to ask. As you are comfortable, encourage an open dialogue with your siblings.

Sincerely,

Addy

 

Have a question? Click HERE. Your name will be changed in the response.

HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance

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