STANDING UP for your health — Principle 5

You Don’t Have To Do It Alone!

Having a rare 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 strong self-advocate. 

Get Support from Family and Friends

Family and friends can be a tremendous source of strength. They can help you with daily tasks and give you emotional support. It can be hard to accept 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
  • Go to healthcare provider and hospital visits with you or look after your children
  • Organize your medical information
  • Research your disease and treatment options
  • Talk with you or listen while you talk

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 them 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 www.caringbridge.org or www.patientslikeme.com.

Know your limits

Having a rare 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 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 To Be Your HealthA 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. Each person can take on different tasks. One person may be better able to assist you with a doctor’s visit, while another might be able to assist you with insurance issues.

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. Or, go to www.patientadvocate.org. 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 or nurse navigator or health advisor
  • Patient advocate, patient advisor, patient educator, or patient navigator
  • Social worker

Why Should You Use a Health Advocate?

“Research shows that quality healthcare means taking an active role in decisions about your care. If you’re facing a difficult medical decision, it’s a good idea to bring someone with you who can help you take an active role in your care when you’re not fully up to it. As a doctor and a patient, I’ve seen how valuable it is to have ‘another set of ears and eyes’ in the exam room. Having an advocate at medical appointments or during a hospital stay can ensure that you get the information you need to manage your health. … Who makes a good health advocate? Someone who is calm, pays attention to details, and can ask questions and state information clearly.”

Carolyn M. Clancy, MD Former Director of the U.S. Health and Human Services Agency for Healthcare Research and Quality/www.ahrg.gov/consumer

Health advocates can:

  • Ask questions or voice concerns to your doctor for you.
  • Ask the “what’s next” questions, such as: “If this test is negative, what does it mean? If it’s positive, will more tests be needed?”
  • Compile or update your medicine list.
  • File paperwork or assist with insurance matters.
  • Help arrange rides.
  • Help you follow treatment instructions, including asking questions about your follow-up care.
  • Remember your medicine schedule.
  • Research treatment options, procedures, doctors, and hospitals.

Get Support From Other Patients

More than anyone else, people living with your rare disease know what you’re going through. They can let you know you’re not alone. Here are some ways to connect with them:

  • Join a support group. If you can’t find one specific to your disease, join a related one that addresses a similar health topic.
  • Look for groups of patients with your disease on social media sites such as Facebook.

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 their professional duties.

Get Support From Non-Profit and Patient Advocacy Organizations

Visit the patient advocacy organizations identified in Principle 2 (pg 23) and the non-profit organizations (pg 56) for additional sources of support.

Stand Up for Your Health—Today!

Standing up for your health is a process. It’s something that happens over time, as you learn more about your disease and gain confidence. Refer to this patient guide when you want to remind yourself of the core skills needed to become an empowered patient. We hope it will help you take steps to become a stronger self-advocate.

Summary

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 and rare disease can be very difficult. Knowing that someone is in your corner can help you get through the ups and downs.

Skills Checklist

Use this checklist to assess your skills in building a strong personal support team:

  • I ask friends, family, or trusted coworkers to help out when needed.
  • I get support by connecting with other patients.
  • My healthcare team offers support.
  • I get support from a professional advocate.

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