The power of the patient voice


I was privileged to speak alongside two other empowered health consumers at the annual Australian Rheumatology Association (ARA) Scientific Meeting in Darwin a few weeks ago.

Our session was called "The patient will see you now" and it was an opportunity for health consumers to have their voices heard and their perspective understood by a range of healthcare professionals including Rheumatologists, Rheumatology Nurses, Physiotherapists and others.

The session proved incredibly powerful as the room was silenced by three women living with RA. One diagnosed at age 6, another at age 9 and myself at age 27. We spoke about the delivery of our diagnosis, the highs and lows of our treatment journeys, the impact of our chronic illness on our relationships with others, our careers and our sense of purpose as women living with chronic pain.

Two major themes of the session were -

1. being heard by your healthcare team

2. building a mutually respectful, trusting, honest and empathic working relationship with your healthcare team

The sharing of our stories and experiences highlighted both the challenges of living with musculoskeletal disease and the successes achieved through empowerment. Some of this sense of empowerment came from the confidence instilled in us by rheumatologists or other healthcare providers, who took the time to educate us, listen to us, respect us - which gave us confidence in our diagnosis, treatment and ongoing management plan.

But how often do we as 'patients' really feel heard? How often are we given the "stage" to express our thoughts, our concerns and our perspective to our healthcare team?

I believe that healthcare professionals who truly see you as a person (not just as a set of symptoms), will take the time to listen to what you think, feel and ultimately want from your health management, despite their time restrictions.

But you, as the patient, must find your voice to be able to communicate your thoughts and feelings. The relationship between doctor and patient (or healthcare professional and patient) is a two-way street!

I am fortunate to speak to medical/healthcare students regularly about the importance of the patient voice and building a strong, mutually respectful working relationship together. I am also fortunate to speak to large groups of healthcare professionals such as those attending the ARA Meeting this year.

However, you can still have your voice heard through your daily interaction with your health team.

Here are 5 things you can do to achieve this -

1. find professionals who you can honestly and openly communicate with

(don't be scared to change doctors if you are not happy!)

2. decide what you want from your health treatment and management

3. talk openly and honestly to your doctor and other healthcare team (every time you see them) about your concerns, needs and goals

4. ask questions and take an active role in the management of your health

5. learn the skills of self-management and empowerment to improve your health and your life

It is your life, your health and ultimately your responsibility to live the happiest, healthiest and as fulfilling life as you can with the cards you have been dealt. So, find your voice, speak your truth, connect with others in a genuine, honest way and see the benefits flow.

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