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Your Personal Support Network ​

Author: Rachel Westlake, BCPA
Editors: Lauren Wheeler, MD, BCPA, Surabhi Dangi-Garimella, Ph.D.

Purpose of this guidance: It is easy to feel overwhelmed when your health is not optimal. Doctor’s visits, test results, keeping track of medical bills, taking your medications—things can quickly add up. And then you also have work, your home, and family needs. Your extended family, friends, and co-workers you trust can help support you during these times of need. In this chapter, we arm you with information on how best to use their help.

Identifying Your Personal Support Network ​

Your personal support network includes people who provide support during your health journey. These might be:

  • Family members: For some people, family members are their first level of support when health and health care is difficult. They can sometimes help organize other people to support you when there is more than you or they can take on.
    • e.g., they can assist with health care appointments and scheduling, help organize food, transportation, and other support
  • Friends: People you trust who can provide emotional and practical assistance.
  • Neighbors and coworkers: People you interact with regularly and can rely on for help.
  • Community members: Individuals from neighborhood groups, clubs, teams, faith-based and other communities you're a part of who can provide support.
  • Online communities: Social networks or online support groups who share similar experiences and can offer advice or emotional support.
  • If you don’t feel like you have a good (or any) personal support network, check the tips in the section “When You Need More Support”.

Building Strong Communication With Your Support Network ​

To maintain effective engagement with your personal support network, clear communication is key:

  • Expressing what you need and feel: Use "I" statements to clearly express your feelings and requests. Be specific when you can.
  • Active listening: Encourage your team members to practice active listening, which includes understanding and validating your experiences.
  • Open communication: Promote a two-way conversation, where you are comfortable expressing your needs and your team members are comfortable expressing their capabilities and concerns.

Involve Your Support Team in Your Health Care Experiences ​

Involving your personal support team in your health care can be done in various ways:

  • Accompaniment to appointments: Choose team members to be present during medical visits for moral support and help in remembering information.
  • Treatment management: Involve those who can help handle medication schedules or physical therapy routines.
  • Emotional support: Engage people who you can share your experiences and emotions with during challenging times.

Dealing with Challenges ​

Engaging with your support team may present some challenges, but these can be managed effectively:

  • Asking for help: It's OK to ask for help when you are overwhelmed and uncertain. It’s also OK to not know exactly what you need. As you build trust and experience with your personal support team, you will learn the balance of when to ask for specific help.
    • Some people may be better at helping with certain things. Some might be funny and distracting; others may be better with practical help like running errands, or medical appointment scheduling. Some might learn what they are good at during your medical challenge. It’s helpful when everyone is patient and generous with each other while learning.
  • Saying no: Assert your boundaries and decline offers that don't align with your needs, values, or comfort level.
    • When you’re unwell, people will offer advice or ideas that are not helpful or that you just don’t want. It’s ok to tell friends and family that you have a plan and don’t need more input right now.
  • Taking breaks: Know when you need time for self-care or being alone and communicate this to your team.
    • It’s easy to get burnt out navigating health care and being sick or having chronic health issues. Even when loved ones or helpful people have the best intentions, most people need time to themselves. If it’s helpful, you can have code words with your team that make asking for this space and time easier and not personal.
  • Managing differences: When you want to seek opinions from others, have open communication and respect for diverse opinions, but remember the final decisions rest with you.

Useful Tools and Resources ​

Several online tools and resources can help manage your personal support team:

  • Support team coordination apps: These can help organize appointments, medications, and more.
    • The b-there-app was designed to help young adults diagnosed with cancer and their support team.
    • CaringBridge is a health journal site that allows designated people to share about what’s going on in a person’s health care experience so that those that care can be aware of what’s happening.
    • There are many other disease or community-specific apps and resources to help organize help for yourself or a loved one. Read terms thoroughly and be wary of hidden costs. Be careful with sharing personal information.
  • Health-focused social media groups: These provide a platform for sharing experiences and seeking advice.

By effectively engaging your support network, you can navigate your healthcare experiences with greater ease and support. Asking for help is not weakness; it's a form of self-advocacy and a valuable skill for managing your health care.

When You Need More Support ​

  • Consider finding a support group by asking your health care team if there is one that might be a good fit for you. There are many support groups online and ways to find in-person groups in your area.

    • If you’re looking for a support group of people who have a similar condition, do an internet search for the issue, your city or town, and age range (or other things that may be important factors for you)

    • There are also peer-support organizations for some issues. Immerman Angels, for example, is an organization that connects cancer survivors for mentorship.

  • Support groups and peer-support agencies function best when they have training and standards they adhere to to keep you safe and ensure quality information is shared.

    • Check on their website or contact them to learn their qualifications for mentors and support group leaders and the standards and rules of engagement for their groups.

  • Patient’s Rising Helpline and Helpline Navigator are good resources for finding ways to manage your care and other needs when dealing with a health crisis.

  • Working with a mental health professional can help you feel less alone in managing your health. Some mental health professionals also run support groups. See the guidance on finding a therapist if you need help.

  • If you feel suicidal and live in the U.S., call the suicide hotline - 988 Suicide and Crisis Lifeline. This line is open 24 hours. Languages: English, Spanish.

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License (CC-BY-SA-4.0), available at https://creativecommons.org/licenses/by-sa/4.0/. SPDX-License-Identifier: CC-BY-SA-4.0

Signed-off-by: Rachel Westlake

Payless Health is sponsored by the Brown Institute at Columbia and Stanford (https://brown.columbia.edu/22-23-magic/) and Patient Rights Advocate (https://www.patientrightsadvocate.org/).

Released under the Apache 2.0 License and Creative Commons CC BY-SA 4.0 license. Copyright © 2023-Present One Fact Foundation.