Why Patients, Caregivers, Advocates, and Health Leaders Share Our Health Journeys

There are many reasons why patients, caregivers, and advocates share our health journeys. My non-exhaustive list is below.

• It helps promote awareness
• It helps educate people on our illness
• It helps others feel heard, seen, validated, and supported
• It helps combat pervasive stereotypes, stigmas, discrimination and ableism regarding chronic illness, invisible illnesses, mental health, and disability
• It helps build social support and friendships with others having similar health experiences
• It helps build connections and networks for cross-collaborative awareness and advocacy initiatives
• It helps illicit much needed changes in healthcare
• It helps promote partnerships with doctors and healthcare systems
• It helps promote and protect patient rights
• It helps promote participatory medicine

Despite all of these important reasons, one thing we often don’t talk about is the motivating factor as to why we share our healthcare journey such as:

• Somewhere along the way, a medical provider didn’t believe us or subjected us to medical gaslighting, when seeking medical care for our illness and its symptoms
• Somewhere along the way someone didn’t believe we are sick or believes we are over-inflating our illness and symptoms
• Somewhere along the way people in our social and interpersonal circles took 3 steps back when we became ill. Some stopped inviting us to gatherings/events and others completely disappeared
• Somewhere along the way, when a person/patient asked for, and needed support, they were met with silence
• Somewhere along the way someone (non-medical provider) gave us unsolicited medical advice, questioned the legitimacy of our medical condition, our medical treatment or told us we “don’t need medications”
• Somewhere along the way we were bullied, harassed, unfairly judged, stigmatized, or even discriminated against
• Somewhere along the way, our legally protected Healthcare Patient Rights were violated
• Somewhere along the way, someone made us feel we no longer had value, diminished our symptoms, and minimized our feelings about our medical or mental health
• Somewhere along the way, others watched us struggle with meeting our basic needs, whilst telling us how to “fix our situation,” while offering no support
• Somewhere along the way we did not have access to appropriate treatment
• Somewhere along the way we couldn’t afford our treatments/medications
• Somewhere along the way we were left feeling, or were told, we are a burden
• Somewhere along the way a spouse or significant other decided we were “damaged goods” and left/ended relationships

Personal experiences creating change

Patients, caregivers and advocates use our personal experiences to promote impactful, positive ways to elicit change for improved outcomes in medical care, improve access to affordable medical care and treatments/medications, promote positive social experiences and connections, advocate for resources to improve financial stability, promote inclusion along with diversity, and address issues with ableism, systemic inequities and discrimination against those living with chronic illness, terminal illness, and/or disabilities.

Unfortunately, more times than not, our healthcare advocacy stems from an unfair experience or negative situation we personally contended with. These negative experiences often are the catalyst for our awareness initiatives and advocacy efforts. We must continue to speak our truth, to eliminate all the barriers and indifferences we personally experience, while helping others through their journey living with their illness and medical care.

Your voice matters! Your story matters!

Never stop orating your personal story because your personal story is integral to promote awareness and support along with address and change the barriers and inequities we face every day!

If you take anything from this article, I hope it’s realizing your book of life may become someone else’s survival guide...So keep writing, reading, and sharing the chapters of your book!