How Going on Disability Led Me to Join the CF Community

After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.

July 22, 2021 | 5 min read
Michelle Herpolsheimer

In March 2009, I had to make one of the toughest decisions in my life. I was 33 years old, working full-time in my field of study, feeling stressed to the max, and my lungs were struggling to breathe and help me live. I had been in the workforce for 10 years and spent five years prior to that earning my bachelor's degree in human services/psychology. I was counting my lucky stars I had graduated college, worked for that length of time, and was still alive.

My physical and mental health were declining, and I knew if I wanted to continue being on Earth, I needed to step away. I quit my job working for the state and applied for disability. I felt so defeated when I filled out that application. I was on IV antibiotics at the time, sitting at home, coughing up blood, and thinking, “Will I even live to see 40?” Time would tell.

Leaving work allowed me to focus on my health 100% of the time. Although I did focus on my health before, it was a balancing act with working and it literally left me lifeless at the end of each day. I was approved for disability initially, completing the application all on my own. (If any of you reading this have ever been through this process, you know how fun that is.) I felt like I was taking “an early retirement” if you will. Something that a female in her early 30s shouldn't have to do in order to survive.

After about a year of being on disability, depression kicked in. I've never openly admitted that to anyone. I started running, which is another story all together. But I knew I wanted to do something more with my life, and I wanted to give back to my community. I began finding different opportunities in my city that I could join to volunteer my time. I joined the advisory board with the YMCA, I coached for Girls on the Run, and I also joined my local CF Foundation chapter.

I immersed myself in what my heart and mind needed to find meaning again in my life.

I joined my chapter's committee for its Wine Opener event. I served on the committee for years, helping with the event each fall; and I always created a team, fundraised, and participated in the Great Strides walk each May.

At some point during all of this, I had heard about something called Community Voice, a virtual opportunity for people with CF and their families to share experiences, perspectives, priorities, and knowledge. I was intrigued -- I knew I wanted to join and felt very passionate about being a part of it. Since signing up with Community Voice, I've established lifelong friendships and connections with others living with CF. I've been a part of programs that have allowed me to share my ideas with the CF community. It has touched my life in ways I cannot describe.


Through Community Voice, I served as a facilitator for a pilot program for teenagers to come together virtually to talk about life with CF, school, college, family, friends, and all the related obstacles. Being a facilitator opened my eyes to what teens today are facing while living with CF. It allowed them to share their stories with each other -- something that could never happen in real life. I am so grateful to have been a part of it.

I also applied to join the CF Community Blog Editorial Board. I was accepted and once again found myself involved in another amazing program that brought meaning to my life. I've always loved to write, and being able to share my perspective with other adults and families in the CF community became another enriching experience for me.

A decade after I went on disability in October 2019, the FDA approved Trikafta® six months early. Trikafta was the first genetic modulator drug that my specific mutations qualified for. I began taking the three life-giving pills on Nov. 16, 2019. Since I've been on Trikafta … well, I honestly could write a novel on that alone. Instead, it is with tears in my eyes and emotion in my heart I can sit here and type to you that I was able to return to working full-time. I am once again using my degree by helping children and families in foster care.

There is a quote I think of every time that applies to my life today and taking that huge leap of faith: “Shallow waters don't lead to new continents” -- Constance Friday. I am saying good-bye to disability. Trikafta has given me a second chance.

It leaves me speechless to think I am now 45 years old, doing what I love again, and feeling I am exactly where I am supposed to be.

I continue to find fulfillment by volunteering for the Foundation and being a member of Community Voice. There are countless other adults living with CF who are also working, getting married, raising families, etc., while being involved with Community Voice. It is an incredible way for me to share my voice, and impact research, and find connection within the CF community. I plan to continue to give my time in all the ways I am capable while navigating this new, never-could-have-dreamed-I-would-be-here life of mine.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Michelle has participated in CF Foundation events locally for years, served on committees, and fundraised. She is a member of Community Voice and a facilitator for Teen Connections. In addition, Michelle is a member of the CF Community Blog editorial board, her CF clinic's patient and family advisory council, and CF advocate for Congressional Captains (Heart of America Chapter). A resident of Wichita, Kan., Michelle holds a BA in human services/psychology. She enjoys writing, including a blog about her life since starting Trikafta®, cooking, riding her bike, gardening, music, singing, and spending time with her husband and their two bird dogs.

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