The Empowered Patient, Part 5: Rally Your Support System

Today wraps up our series on becoming an empowered patient or patient advocate. We hope 2020 brings you all nothing but health and happiness, but should you face a medical challenge, I hope these suggestions help you or your loved one walk a smoother path to healing.

Step 5: Rally Your Support System!

You don't have to go through being a patient by yourself. Share your experiences with family, close friends, and trusted advisers. There are many ways to bring folks together to help you, including social media, websites, phone trees, and even email lists. One of your friends or family members may step forward to undertake the responsibility of keeping everyone updated, or you may choose your own way to do so. Whatever you choose, do not hesitate to ask for help.

There are websites that can help you inform friends of your status, allow individuals to volunteer for tasks, post encouraging comments, and even schedule dinners and errands. Here are a few:

• CaringBridge
• PostHope

If you use social media, there are a number of approaches you could take. Here are some ideas.

• Create a Facebook Page to use solely to update interested friends and family about your progress. You can administer the site to be private, public, or anything in between. You can choose who is a member, who sees what kinds of posts, and other settings as well.
• Use a blogging platform as a public journal to record your journey. This approach works if you find comfort in writing, enjoy interacting with your audience through comments, and want more flexibility in terms of content and organization. Blogging can be time-consuming, but for many, it can be very therapeutic.
• Create a hashtag for your friends and family to use on Twitter, Instagram, or other social media. This way you can search for the hashtag and see what everyone is posting. This is a way to show support, send links, and generally create a community around a person or event. Sample hashtags: #ElliesFight #LoveYouSam , etc.

Of course, you may choose to keep a lower profile or find yourself with slim pickings of folks you want to include in your journey. Consider reaching out to patient advocates and community groups set up to help patients navigate their options. Here are some suggestions for patient advocates, who are often called in to help with a medical scenario that is particularly challenging:

• Patient Advocate Foundation
• AdvoConnection Directory
• How to PIck a Patient Advocate

Patient support groups can be found online or in your community. Larger cities will have more choices, but contacting your community center or public library will help you connect with groups that are available. Ask your doctor about support groups as well, and it wouldn't hurt to call your local hospital to see what connections they have as well. If you are a caregiver, you will need a support system as well. Take care of yourself, too.

Finally, keep your own notes on individuals who you know who could be of help, even if you don't need their help right away.

Write down the names of your support system in your records. Include mailing and email addresses, phone numbers, workplaces, and other details. It may be helpful to have a "Notes" section under each name where you can include details such as "Offered to cook and freeze some dinners." "Her cousin is an orthopedist." "Works nights - call any night." "Offered airline miles in case of travel." "Parents live near XYZ hospital." Details like this may escape you later, but could come in handy as you try to make decisions about your healthcare.

Managing a health issue or crisis is physically and emotionally draining, there's no doubt about it. We hope that these steps help target some key areas of planning that can assist you in getting through your or your loved ones challenges. 

To download all five steps in one form, please click below.