Pillar 5: Build a Strong Personal Support Team
For many of us, asking for help is not easy.
Yet, empowered patients know that help from others can help them get the healthcare services and treatment they need. 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 of us find joining online groups or forums offers the level of support we 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. Remember, we at AA&MDSIF are here to help. Call us and we will connect you with other patients, 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.
Get Support from Family and Friends
You feel lonely. You feel like no one could possibly understand what you're going through.
Family and friends - the people who love you - can be a tremendous source of strength. They can help you with daily tasks and give you emotional support. It can be hard accepting the fact that you need support - but it is important for your health. Try these tips.
Make a List of Tasks
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
Ask for Help
Family and friends often want to support you, yet they may not know how. Feel free to tell them what you need.
Having trouble? Try these conversation starters:
- "I could use a hand with..."
- "It would be really helpful if you would..."
- "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
I encourage my wife to stay active - even when she's feeling tired. I remind her to take a nap. I try to be helpful and supportive and ask how I can help her.
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 Web site 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.
Get Support from an AA&MDSIF Patient Educator
Have questions about your disease and treatment options? Call us at (800) 747-2820. Ask to speak to our patient educator.
Get Support from a Health Advocate
A health advocate is a family member, friend, trusted coworker, or paid professional who can help you advocate for your best care. This person can go with you to your doctor visits, ask questions, and write down information. You may also want your health advocate to speak up for you when needed.
Ask a family member or friend
A friend or family member may be able to serve as a patient advocate. You may want to ask a few people to share that role.
You realize there are other people out there who have dealt with it.
Or choose a professional patient advocate
The Patient Advocate Foundation has professional case managers who provide a variety of services to help patients to 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
- Healthcare 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 AA&MDSIF 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 AA&MDSIF 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 healthcare provider about talking with a peer mentor at your treatment site.
Get Support From your Healthcare Team
You may be able to get emotional support from a member of your healthcare team. This healthcare provider may be a counselor or social worker. Or it may be a nurse or doctor who goes above and beyond.
- Why It's Wise to Use a Health Advocate: Prepared by Carolyn Clancy, M.D., Director of the Agency for Health Research and Quality, this brief, easy-to-understand advice column is designed to help consumers navigate the health care system.
- The Empowered Patient Coalition: This organization is a consumer and advocate-led effort to inform, engage and empower the public to assume a greater role in their own medical treatment.
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