17 posts tagged “advocacy”

How to be your best health advocate

Posted October 3rd, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health.

Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you.

For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call the gastroenterologist who suggests more invasive tests, or perhaps refers you to another specialist. You wonder if there are natural or holistic options because you’re hesitant about taking more prescription drugs.

What do you do? Will traditional medicine cure you? Is complementary medicine safe and reliable? Which websites provide credible information? Which doctor is trustworthy?

For me, there was nothing more important than seizing control of my health. It was a priority I couldn’t ignore. Being involved in the decision-making process can reap numerous benefits.

No one knows your body better than you, and no one has more at stake.

Here are a few steps you can take to become your own best health advocate:

Listen to your instincts – Your body is brilliant and gives you clear messages when something is wrong. Make an appointment to see a doctor if you feel something is awry.

Lists – Create a list of your health issues. Include how long you’ve been experiencing the problem, the severity of it, and list any questions you’d like to ask the doctor. Having a list to lean on is both necessary and important.

Research – Medical websites are great resources, but not all sites are reliable. Trustworthy sites should cite an article’s author and the medical credentials for the preparer or reviewer. (Examples of authoritative sites are American Cancer Society, Centers for Disease Control and Prevention, familydoctor.org, HealthyWomen.org, WomenHeart.org, National Institute on Aging, American Diabetes Association, American Stroke Association, National Center for Complementary and Integrative Health, National Multiple Sclerosis Society, National Institutes of Health, PubMed/National Library of Medicine, Mayo Clinic, Medlineplus, and healthfinder.gov.)

Use your voice – Speak up for yourself and insist doctors answer all of your questions. Make sure you give them thorough information and that they are listening. If you’re unhappy with your medical team find another one. Do not allow yourself to be rushed.

Understand how your health insurance plan works.

Review your medical bill for errors. Ask for an explanation if there’s an entry you don’t understand.

Get a second opinion when necessary. Ask for referrals from your doctor or people you trust.

Maintain your own health records. Learn from others who have experienced similar health issues. This can help you emotionally and provides you with the confidence to find what works for you.

Be persistent – If your doctor doesn’t return your call, call again. Insist on getting the answers you need.

Be organized – Never leave an office visit without a follow-up appointment or referrals and labs in hand. Use a written or computerized calendar to keep on top of your schedule. Take advantage of phone apps to keep you organized.

Get answers – If a doctor isn’t providing you with the answers you need find another one. Keep searching until you find what you need. Always keep your eye on the prize of wellness.

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“Always know that you are not alone.” Member Debbie shares about life with PTSD

Posted May 30th, 2017 by

As a “happily married mom of three and grandmother to four,” Debbie works each day to remain active and positive, filling her time with the things she loves, like crocheting, baking and helping others to see there is a light at the end of the tunnel.


“I try very hard each day to stay as active as possible, both physically and emotionally, always trying to manage my bipolar disorder, PTSD, OCD and anxiety disorder. It’s a lifestyle for me, and it works.”


Though she now manages her condition confidently and helps others learn how to do the same, that wasn’t always the case for Debbie. “I am told my PTSD came about from a rough childhood. I grew up in a severely dysfunctional, alcoholic family,” she shared. “I continued the fiasco by marrying an abusive alcoholic. I have also been victim to multiple rapes, molestation and physical abuse, all from people I should have been able to trust.”

Eventually, Debbie was referred by her longtime therapist to a rehabilitation center that was looking for peers (peers are past mental health consumers who now help other mental health consumers based on a shared personal experience). “I spoke with the director, got hired, and immediately started training to become a Certified Peer Specialist,” Debbie said. She now helps others learn the basics of everyday living – making budgets, paying bills, making menus, grocery shopping, setting up appointments, taking medication – she also runs self-help groups on building self-esteem, relaxation techniques, aromatherapy and more.

Along with her work as a Peer Specialist, Debbie also does advocacy work to improve awareness for mental health conditions in her community. She was invited to speak at the Tioga County and Broome County meetings on a range of subjects, from electroconvulsive therapy (ECT), molestation and rape survival, to breaking down false biases based on misinformation on TV and in movies.

As well as her mental health advocacy and her work as a Peer Specialist, Debbie also runs a Facebook group, called My Happy Place, where she shares positive affirmations with her 250+ followers. When asked for her advice on what to do when you’ve just been diagnosed with PTSD, she said:


“Always know that you are NOT ALONE. You are not crazy, or over sensitive. PTSD comes from trying to be too strong for too long or on your own, with little or no support.”


Debbie says: “Talking about your fears and insecurities with someone who truly listens and does not judge you makes a huge difference. You can learn to accept your fears, work through them and enjoy life again. It doesn’t mean you forget what happened. You learn to get stronger for it.”

Finding others with PTSD

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