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’m feeling and how to best support me? I don’t want to burden them with my issues.
Talking about your experience living with a bleeding disorder is not a burden-it’s an important part of your life. Your siblings may also be feeling guilt or frustration if they can’t relate to what you’re going through. Here are some ways to share how you’re 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’t already connected with your local organization, reach out using HFA’s contact list.
- HFA’s 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’s 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’s Coping with Sibling Issues Toolkit has information for the entire family. Share this with your siblings as a resource for understanding what you’re going through and managing their own feelings. The presentation titled, “The Invisible Child: Understanding the Experiences of Siblings in the Context of Family Illness,” 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’s something they want to know, but don’t want to ask. As you are comfortable, encourage an open dialogue with your siblings.
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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 “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance