Some of us have family members or close friends who live nearby and are willing and able to serve as part of our support team. Others choose a professional patient advocate. And some find joining online groups or forums offers the level of support they need.
Having a chronic disease can be very difficult. Knowing that someone is in your corner can help you get through the ups and downs. AAMDSIF is here to help you too. Call us, and we'll connect you with other patients through our Peer Support Network or local support groups, send you educational materials, and offer resources and places to contact as you put together a support team.
Remember - You don't have to do it alone.
Having a bone marrow failure disease can be a heavy burden. But you don't have to carry it alone. There are people in your life - and people you don't know yet - who would be glad to help you cope with the physical and emotional demands of your disease. With their support, you can become a stronger self-advocate.
Ask for Help from Family and Friends
Keep a list of tasks you could use help with. For instance, you might ask family and friends to:
- Cook, clean and shop for you
- Give you rides
- Look after your children
- Talk with you, or listen while you talk
- Go to healthcare provider and hospital visits with you
- Organize your medical information
- Research your disease and treatment options
Having trouble asking for help? Try these conversation starters:
- "I could use a hand with ..."
- "It would be really helpful if ..."
- "I'm not feeling very well today. Would you mind ..."
- "I sure could use some help with ..."
- "I'd really appreciate it if you ..."
Keep Your Support Team in the Loop
Family and friends want to know how you're doing. But answering their questions can be tiring.
Think about asking one family member or friend to give updates on your behalf. Or post updates on a health social networking website like CaringBridge.
Know Your Limits
Having a bone marrow failure disease takes a lot out of you. Know your limits, and feel free to say "no" to outings and activities planned by family and friends.
Consider a Professional Patient Advocate
The Patient Advocate Foundation has professional case managers who provide a variety of services to help patients settle issues with access to care, medical debt and job retention related to their illness. Their services may be free. To learn more, call them at (800) 532-5274.
Also, many hospital, community health centers, and long-term care facilities have professional patient advocates on staff. They go by different titles. Some of the more common titles include:
- Care manager, or case manager
- Health advocate
- Health care navigator, or health advisor
- Nurse navigator, or oncology nurse navigator
- Patient advocate, patient advisor, patient educator or patient navigator
- Social worker
Get Support from Other Patients
More than anyone else, people living with bone marrow failure diseases know what you're going through. They can let you know you're not alone. Here are some ways to connect with them:
- Attend AAMDSIF meetings and events
- Call us at (800) 747-2820. Ask for our patient educator and request to speak to a Peer Support Network volunteer
- Go to the AAMDSIF Facebook page
- Join a support group. If you can't find one specific to your disease, join a related one - such as a group for cancer patients
- Join an online discussion group like Marrowforums.org
- Ask your health care provider about talking with a peer mentor at your treatment site