Living With PF Has Inspired Me to Become a Patient Advocate

I have begun a new, educational phase in my life: I’m working to become a patient advocate.

Honestly, I’d never thought about patient advocacy until I was diagnosed with pulmonary fibrosis in December 2019. But it became extremely important to me when I realized that my voice was not being heard.

Before my illness, I thought of nothing but securing my career and my future. I never thought about how hard life must be for those facing a rare or chronic illness, and I never considered the possibility of becoming disabled. My life consisted of family, work, and school. I stayed in my own bubble and didn’t allow the outside world in.

It never crossed my mind that I’d one day face a serious and incurable illness.

But life has a way of giving us harsh doses of reality. I’ve written about how difficult it is to hear devastating news, especially when it comes to your health. After I received my diagnosis, I couldn’t help but be fearful. I felt drained of all energy and ability to think. Suddenly, concerns I’d never had about illness came rushing in.

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Feeling lost

A newly diagnosed patient can feel lost, alienated, and alone. We search for ways to cope and look for answers, reasons, faults, and blame. Many emotions hit us at the same time. It can become too much to handle.

I experienced a range of emotions post-diagnosis, but have since learned how to cope with my reality. The rare disease world has become my world. It’s still challenging, but I believe I’ve gained a lot of experience and knowledge.

I quickly realized how difficult it was to raise my voice in healthcare settings, but at the same time, I began to recognize that my voice is my most powerful tool. I’ve had to fight against biases and inconsistencies regarding my treatment. I’ve had several medical teams that each insist on doing things their own way. I had to speak up and become my own advocate.

Now, I want to help others find their own voice.

Improving communication

Communication skills are key to this process. It’s important for patients to feel that providers are actively listening to them. I’ve heard other patients’ testimonies and connected with their lived experiences. I’ve felt their needs, concerns, and frustrations. Sometimes we may feel that our attempts to be heard are futile, but that’s part of the process.

Good patient-provider communication involves understanding the patient’s values and goals regarding their healthcare. Listening to the patient’s needs and desires ensures that the most suitable treatment plan is chosen.

Cultural differences can create a communication barrier between patients and healthcare providers. Patients may benefit from attending appointments with an advocate who can interpret or aid in communication, ensure all regulations are followed, or read and translate important materials.

It’s also important that patients stay up to date on research, clinical trials, and treatment options pertaining to their illness. We can do so by visiting credible websites that offer accurate health information.

I remember a time when I felt I was bouncing around in the healthcare system, but I’ve realized that it was a result of me not knowing how to navigate it. It wasn’t until another patient offered me valuable insight that I learned how to advocate for myself by asking the right questions, carefully reading all of the materials I’m given, and learning more about my medications. I’ve become familiar with my illness, its symptoms, and especially my medical insurance.

As a future patient advocate, my goal is to help others facing barriers on their healthcare journeys and to ensure that their voices are heard.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.