Living With PF Has Inspired Me to Become a Patient Advocate

Columnist Ann Reynoso wants to ensure that every patient's voice is heard

Ann Reynoso avatar

by Ann Reynoso |

Share this article:

Share article via email
Main graphic for column titled

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.

Recommended Reading
banner image for

We Can All Play an Important Role in Rare Disease Advocacy

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.

Comments

Marilyn Chancellor avatar

Marilyn Chancellor

hello Ann,
It’s ALWAYS been my desire and passion to become an IPF ADVOCATE, however I tried last year to sign up with BI but they didn’t have any open opportunities!
I would love to speak with you and learn how you managed to make it through the process of accept-ion and would love to join in the fight to be heard . I have been fighting ILD for 11 years now and have been researching AND asking my doctors about how to get to the cure faster, I truly believe COVID has sped up the science of finding the cure for REVERSAL of scar tissue but WE MUST show our courage and drive to not be left in the trenches BUT BE A PART OF THE CURE is my prayer.
Hopefully you will reach out to me and we can discuss how to grow our voice’s TOGETHER!
Loved your story 👍🏽

Reply
Ann Reynoso avatar

Ann Reynoso

Hello Marilyn. Thank you for reading my column. I love hearing when other patients want to become an advocate. The only way to be heard is to create more voices.
How I got my start was through the National Patient Advocate Foundation (https://www.npaf.org/). I begin by attending webinars that you can find on their website under "Resources." I also signed up for some of the their Advocacy Curriculums that they provide, which you can find on their website under "Get Involved." I try and learn everything I can about being an advocate. I also have a social media account where I document my daily struggles as an "lived experience" patient of LIP/PF.
I hope this will be a good start for you too.

Reply
Cynthia Panza avatar

Cynthia Panza

Your article spoke to me and I felt like I too would like to be a voice in support of the cure for IPF. I wanted to keep the information to myself when I was diagnosed a year ago. I did tell my husband and my son. I'm not one that would want pity. As I let more people know, that's what I was feeling, I found rarely does anyone know anything about PF, unless they knew someone with it. I also am keenly aware of illnesses now which have their own "month", fundraisers, etc.,
PF would be grouped with Lung Association, I believe. I would be interested in what can be done to raise awareness.
Cindy

Reply
Ann Reynoso avatar

Ann Reynoso

Thank you Cynthia for reading my column. I completely understand about not wanting pity. I didn't, and still don't, want to be pitied. I want people to continue seeing me as the same person, just with some added appendages (my oxygen). I found a lot of information through BioNews (https://pulmonaryfibrosisnews.com/). I loved reading everyone else's stories on how they were dealing with this illness. I also found a lot of information from the Pulmonary Fibrosis Foundation https://www.pulmonaryfibrosis.org/), but how I became an advocate was by asking organizations how I could become involved in being a voice. Following support groups on social media can help a great deal too.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.

Your PF Community

Woman laying down reading

Visit the Pulmonary Fibrosis News forums to connect with others in the PF community.

View Forums