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Special Book Excerpt From The Take-Charge Patient (Part 2 of 4)

Part II: Creating a Support System When You’re Given a Serious Diagnosis

By Martine Ehrenclou, M.A.

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Take Charge Patient
If you’ve been given a serious diagnosis, you’ll no doubt need time and support to process the information. Here are a number of steps to help you. Start doing what you can now.

Create Your Support System
If you have a serious illness, you will need to create a support system. Not just for you, but if you have a spouse and children, they will need support as well. For example, if you cannot drive the kids to their after-school activities, will your spouse do the extra driving or can you count on a family member or good friend? According to a few health psychologists, family and friends want to do a lot.

Create a Secondary Support System
You’ll need a secondary support system for your immediate family. For example: You are a mother with two kids and you have cancer. You currently take care of your kids and when you are undergoing chemotherapy treatments, let’s say your spouse takes over. Who supports your spouse while you are recuperating? Ask your advocate to help you figure this out.

Find a Health Psychologist
If you are able to see a therapist, preferably a health psychologist, you’ll be happy you did. If you have a serious diagnosis, there are many sources of information and support that an experienced therapist can help you with. A health psychologist can help you sort through your concerns and questions about your illness or condition. Also, it can be very helpful to have someone listen to you who is not personally involved in your illness or condition. Some health psychologists also function as professional advocates.

Take Care of Your Emotional Health
If you have a serious illness or chronic medical condition, several doctors suggested the importance of getting therapeutic support to help you deal with it. Processing what you are going through with a trained professional can be an important part of healing. Seeing a therapist does not mean you are weak. In my opinion, it shows strength to reach out for help from a professional.

It’s not uncommon for depression, hopelessness, anxiety, anger, and other feelings to accompany a serious illness or medical condition. This can be a challenging time in your life. Reach out to trusted loved ones and ask for their support.

Join a Support Group
Consider finding a support group of people who share your medical condition or illness. You can exchange information and resources with other members. It will help you to connect with people who are going through what you are. You can find out about good doctors and treatments from members of the support group. You can also learn about clinical trials that other members are participating in and explore side effects, treatment and outcome.

Develop Support Networks
As part of your journey, you may want to gather support from your loved ones and also share your progress with family and friends without calling or emailing each one individually. There are many opportunities for people who are experiencing a significant health challenge and want to connect to their loved ones.  For example, Caring Bridge (www.caringbridge.org) and CarePages (www.carepages.com) offer private space where you can post your story, along with updates on your health, photos and more, for your family and friends. They can leave messages for you. These sites have been developed to be easy to set up and are user friendly. You control access to your pages, so they can be as private or public as you wish. Meal Train (www.mealtrain.com) makes it easy for you or your advocate to organize the delivery of meals when you need them. Your friends and family sign up to prepare meals, the menu is available for all to see, and you can list dietary restrictions and preferences.

Phone trees are another way to let your loved ones know when you have tests and results and want to provide updates on your progress and other information. After you create a list of people you want to include on the tree, you can assign a point person to whom you give the information you want passed on. She calls x number of people on the list and updates them as you have requested. They, in turn, contact x more people, and so on.

Create Your Health File
Put together your health file now. Your health file will include copies of your pertinent medical records, test results, copies and reports of MRIs and other scans, a list of your current medica-tions and their dosages, and a list of over-the-counter medications, including herbs and supplements. It will contain names and contact information for doctors you see for your current illness or condition. Describe any alternative medicine treatments you are undergoing and name the practitioners you see. Not only will this allow your doctors to see your medical history and current medical status, but it will also give you a sense of control.

By taking charge of your medical records and information, you are empowering yourself and becoming a take-charge patient. Take-charge patients feel more confident, less helpless and less vulnerable to the medical system they are dependent upon.

Create a Medical Journal
Going through a serious illness or chronic medical condition re-quires a steep learning curve on your part, as you will be learning a new language and how to navigate a new world. Taking notes on new doctors, terminology, possible treatments, new research, possible medications and more can help keep you organized and focused.

Your medical journal is also for keeping track of your symptoms and side effects, creating questions for your doctors, noting answers to your questions, and for anything you think of regarding your condition that you might want to refer to later.

Empower Yourself as a Take-Charge Patient
If you are diagnosed with a serious illness or chronic medical condition, part of your battle is to maintain hope, confidence and a sense of control. Control is the key word because the more you can control as a patient, the more empowered you feel.

Tips for Becoming Empowered

  • Create your health file with copies of all of your current medical records.
  • Write your current health summary.
  • Create your medical journal.
  • Research doctors you need to see. If you are inexperi-enced with the internet, enlist a computer-savvy person to help you.
  • Research recommended treatment plans.
  • Create a support system of loved ones to help and support you.
  • Create a buddy system. Pick a couple of good friends, family members or your spouse to help you distill medical information and generate ideas on how to seek good treatment.
  • Become affiliated with a disease association such as the American Cancer Society. It can offer you information, resources and support. Such associations are devoted to empowering patients by providing the best information possible. You can obtain information from these organizations about online or in-person support groups.
  • Don’t put off what you can do now in regard to medical treatment.
  • Join support groups for your medical condition.
  • Research medications that are prescribed for you. Find out about their side effects, what they are for, what they will do and more. Discuss any questions you have with your doctor.
  • Even if you are seeing a specialist, such as an oncologist, keep your PCP in the loop. Tell her about what medical treatments you are undergoing, which new medications you are taking and how you are doing. Your PCP should be aware of your treatment summary and your care plan.
  • Keep a calendar for yourself. Keep track of dates for your next test, treatment or screening. If a doctor tells you that a certain test should happen within a certain amount of time, write it down and stay on top of it. Ask your doctor for a time line so you can stay organized.
  • Prepare now. Preparing ahead of time is always easier than leaving it for later. If you are diagnosed with a serious illness or chronic medical condition, get organized now. Who will help you? Who will help your family? Which doctors might you see? Will you hire a professional advocate? Do you want to consult with your religious institution and see what they offer that may help?
  • Make connections now with people who will help serve your needs later on. Create a list of things you need to do in the next two weeks. Do you need therapeutic support? Do you need a health psychologist who specializes in supporting and advocating for people with your medical condition? If so, make the call now or at least write down a name with a note to research this later.
  • Become very familiar with your health insurance plan. Some people have long-term care policies—find out if you have benefits to hire a home health aide. You may not need that, but it’s so much easier to find out now when you are up to it.
  • Research your illness. Use credible websites and check the information with your doctors.
  • Jacki Koob, RN, suggested asking your insurance plan to assign a case manager to you. She explained that this person can help coordinate services and navigate around obstacles for care.
  • Get a second opinion, and even a third. This is not just to confirm your diagnosis and possible treatment, but to instill confidence in you.
  • Prioritize. Your time and energy are important now.
  • Delegate responsibilities. The demands of treatment can be great, so take care of yourself and enlist your advocate and loved ones to help you at home.
  • Get educated about side effects. Learn which are impor-tant and which are simply bothersome. Record side effects you experience in your medical journal. Keep track. Talk to your doctor about them. Bring in your medical journal when you meet with her.