Ask the Health Leaders: Sharing Your Story

We asked our health leaders: Do you feel that sharing your (or your loved ones) journey with CF has been healing? If so, do you have any tips for others wanting to share their story?

Response from Ella

I think sharing my patient story has helped me connect to other patients who are experiencing the same health circumstances and obstacles that I am and this has certainly helped me through difficult times. If you want to share your story for the first time, don’t be afraid or held back by the fear of judgement, or that you don’t know enough about your healthcare or disease. Take stock in your lived experience and the healthcare obstacles you have dealt with and overcome, and use that to connect with others.

You are helping to inform other patients, share insights with healthcare companies, inspire researchers, and collaborate with patient organizations. Your experiences are unique and you can bring light to the ways you have dealt with issues and the suggestions you have for improvements and gaps in care and treatments. By sharing your story, you can directly contribute to advancing health outcomes for yourself and others with CF.

Response from Nicole D

I grew up remaining pretty private about my CF, mostly because I never wanted to be treated or looked at differently. I did not think people were familiar enough with CF and if they googled it, it wasn’t always the accurate depiction of CF in my life. It wasn’t until I started getting older that I realized that CF is just a part of me, something I have to manage, but it doesn’t define me. And if I carried myself in such a way that showed that to others, then it was okay to be open. It actually became therapeutic to share my journey and experiences with others, even if they couldn’t fully relate. It helped get it off my chest (pun intended) and no longer weighed heavily on me. I also have been so inspired by others living with CF that I have connected with on social media who share their stories and generate CF awareness.

It's partly my personality to not share too much, but I also feel so vulnerable sharing, that it isn’t something I do often. I am always thinking of ways to share, though, and like to approach it in a creative way. Whenever I have shared my journey or experience on social media I am greeted with such kind, warm and supportive comments from those that see it. It usually surprises me to see the reactions but it is a good reminder that it's worth sharing.

Response from Marieliz

Sharing my journey has been amazing for me, it’s allowed me to say things that I usually wouldn't say out loud. It’s given me a healthy way to share my thoughts, struggles and emotions instead of keeping everything locked inside. I was always a quiet person and kept my feelings to myself and this has given me a voice to finally speak up and it’s helped me realize how important it is for our CF community to be able to speak up and share experiences because it helps us not feel alone.

I would recommend others to definitely share their story because whether they believe so or not, their voices matter and you’d be surprised how many lives you can touch and motivate by doing so. Raising that voice and sharing their experiences, helps change the way doctors treat us, highlights important matters that need to be addressed and makes differences.

Response from Moriah

I think that talking about and writing about my experiences with CF has been very healing. Being able to express and articulate my trials has helped me to reflect on how I feel about having CF, instead of just internalizing everything and not really processing it all. Sharing on a public platform, where others can reach out and offer support, also helps with feelings of loneliness and isolation.

If you're wanting an outlet, but aren't comfortable going public yet, I recommend starting out by journaling. When or if you are ready to share your story publicly, my recommendation is to be genuine and don't hold back. Don't hesitate to share something because it's gross or morbid or depressing; whatever feelings you're dealing with, someone else out there is dealing with it too.

Response from Kenny

I am not an open person by nature, even more so when it comes to my CF experiences. I tend to bottle and bury things rather than address them, so sharing on any medium is outside of my comfort zone. However, being able to brainstorm, revise, and edit writings before they are shared has gotten me more in touch with how I approach different aspects of my life. Being an advocate for Cystic-Fibrosis.com has also allowed me to express myself in the most honest way yet when it comes to my CF experience, which I really appreciate.

I think sharing my journey has given me the skills to now look inwardly from a more emotional perspective, whereas before I was focused on purely physical aspects to monitor my health and report to my care team. While I may not feel healed by all this, I am appreciative and happy with the flexibility to share on my own terms.

Response from Mikayla

Sharing my journey has been healing, I am a person that does not like to keep my feelings all inside. I have met so many amazing friends and gotten experiences I would have never otherwise had if I had been silent about my illness. If you are someone who wants to share, starting simple with posting informative captions on social media is a great intro to share your story. Don’t feel obligated to share every detail all at once, it’s nice to keep some privacy so do what you’re comfortable with. It’s your story!

Response from Jennifer

Sharing my story has been quite helpful. I have been extremely private all my life and lived in a way where I kept my health a secret. I kept much of my pain a secret. Very few people ever knew about my battles. After struggling emotionally, a major part of the last two years, as I navigated the process of divorce, I realized the power in talking about your burdens. Soon after I wrote my first article about CF.

In speaking out about my struggles I not only released so much built-up emotion, I found others who understood my story. I found companions in my pain. I was able to help others as well who struggled with some of the same turmoil I was suffering with. It became healing in so many
ways and gave me a sense of pride I was lacking. My story was not a secret to hide in the dark corners of myself but rather a journey filled with resilience and obstacles overcome. Be proud of the battles you’ve fought. They make you a warrior.