What to Do if You Lack the Energy to Self-Advocate
Originally published August 21st, 2013
If you read my blog post, “I Have Three Words for You” – you’ll remember how I talked about my belief that getting proper healthcare means that you must advocate for yourself and become a vital part of your healing team. But what if your health issues leave you unable to advocate for yourself? Or, like one of my readers asked me – what if you don’t have the energy or strength to self-advocate, what can you do? It’s a valid point and it’s easy to feel intimidated while sitting across from your doctor.
1. Recruit a Trusted Friend or Family Member:
Your best strategy may be to enlist the help of someone else to advocate on your behalf. Have a trusted friend or family member learn about your medical condition and accompany you to appointments. This person can come prepared with a list of questions and issues to address with your health care provider. Sometimes even the presence of a third party will cause physicians to be more thorough and attentive. Even though I have an amazing relationship with my doctor I’ve brought my Beloved into an appointment with me when I was getting test results. I didn’t want to forget any of my questions and wanted an extra set of ears listening for me. I discovered that it’s actually empowering having two people on the opposite side of the doctor!
2. Hire a Professional Health Advocate:
What if there is no one in your immediate circles that you feel comfortable asking for assistance, or if you feel that your medical issues are too in-depth for a personal ally to take on? Did you know that you can hire a professional health advocate? I had no idea this was even a profession until a couple of years ago. Health advocates are also referred to as a patient advocates and are trained to create a dynamic in which patient-centered care is the main objective! To be honest, it partly amazes me and partly saddens me. It’s sad that our healthcare system is in such a state that a person even needs an advocate to help them navigate their healthcare, but at the same time, I’m delighted that there are professional people out there who can help.
they are professionals and charge fees obviously. The good thing about a professional is that they have to adhere to a code of conduct that guarantees patient confidentiality. Their main concern is ensuring that your health and safety are the top priority in the care you receive, and that any values or beliefs that are important to you are respected. While they will be a strong ally working on your behalf, their role is one of guidance and support, not making medical decisions on your behalf. You can view the complete code of conduct for Health Advocates here.
If you are interested in hiring an advocate, there are many resources available online to help you locate a professional health advocate in your area.
Advo Connection offers a listing of professionals and a list of books and blogs that can be very helpful.
Canada: Help with Healthcare is one example of a Patient Advocacy Service
U.K.: You can access a database of more than 2,000 resources at Patient.co.uk.
3. Inquire at Your Hospital or Medical Clinic – Many Have Patient Advocates on Staff:
I doubt you’d get the same level of assistance with this as you would by hiring your own independent patient advocate, but keep in mind that if you or someone you care about is in the hospital – many hospitals have a Patient Advocate on staff. All hospitals in Ontario, for example, are mandated to have a patient advocate on staff. Don’t be afraid to ask to speak to someone in the Patient Relations office of your hospital. The caveat here is obvious – although the patient advocate is a professional they work for the hospital so there has been criticism launched at people who fulfill this role as to where their allegiance truly lies.
4. Patient Groups
If you’ve been diagnosed with a specific illness or belong to a specific patient group like one listed on Inspire’s website – many of these groups have forums and their own patient communities. Patients getting online to discuss and share health information is referred to as “Social Health” and is truly a life changing phenomenon for some people. A Patient Group is how e-Patient Dave found the cure for his cancer. His doctor didn’t recommend the treatment he took, it was actually patients that he had connected with on a cancer forum who told him about the treatment and he’s alive today because of it. I learned about progesterone use to prevent miscarriages from another woman who had suffered multiple miscarriages like me, my doctor never mentioned it and even when I asked he told me it was a placebo effect. I have three beautiful children today thanks to my own self-advocacy and thanks to speaking to other women!
5. Find a New Doctor:
Remember that while your doctor and other healthcare specialists you work with have a degree of professional experience that you don’t, this does not mean that you don’t have valuable information and input that deserves consideration. A doctor that truly has your best interests at heart will welcome you to be a key player in your care. If your doctor doesn’t welcome your input then maybe it is time to find a new doctor. The truth of the matter is that enlightened doctors KNOW that empowered patients that participate in their own healthcare are more likely to “adhere” (I despise that word – ugh) to the treatment plan because they’ve actually had input!