Having an Eating Disorder and CF

After gaining weight on IV steroids to treat my cystic fibrosis, my self-image became distorted, and I developed anorexia. I realize that I am not my illnesses, but they are a part of my life that I can’t hide anymore.

| 8 min read
Emma Selden Headshot
Emma Selden
Emma smiling in a hospital bed with a feeding tube.

This blog contains content about an eating disorder and could be disturbing to some. If you or someone you know has an eating disorder, contact the National Eating Disorders Association helpline by calling 1-800-931-2237.

The first time that I heard my doctor say the “A” word I felt disgusted. Disgusted with me, disgusted with what I had done, and disgusted for not doing anything about it sooner. The stigma around eating disorders stems from a lack of understanding. Shame and embarrassment surround the words “eating disorder,” and for what reason? An eating disorder is a disorder — it is not a choice. For people to understand, I need to tell my story, which is why I’m writing a blog about my anorexia — to advocate for those who don't feel comfortable sharing their struggles.

Growing Up With CF

Calorie is a word that is dreaded by many, but crucial to patients with cystic fibrosis. Generally, cystic fibrosis patients struggle to gain weight all their lives. We are told to eat double the amount of calories that a “healthy person” must consume to power our bodies because our lungs are working harder to breathe. And as a young child, this was amazing. Eating whatever I wanted, when I wanted, with no repercussions was awesome. Having that young metabolism and being praised for weight gain by my team was great — until it wasn't.

Modulators and Medications

Modern medicine is amazing, and I am thankful for every drug/medication that I am on. However, with new medications come new nutritional standards. Trikafta® is the first modulator therapy that I had access to, and I was ecstatic when I was approved for it. I did not gain much weight from being on Trikafta, but I know of many patients who have struggled with weight gain from this modulator.

I would not change taking this life-altering medication for anything, but what I didn’t learn until later was that because it is life-changing, I would have to adjust parts of my lifestyle. I didn’t alter my nutritional habits, so I was eating what I wanted, when I wanted. This is not wrong, but I definitely could have made healthier choices.

Although Trikafta didn’t cause me to gain weight, another drug did. When I was in the intensive care unit (ICU) in January 2020, I was on IV steroids. Without knowing the toll these would take on my body, my world changed. I ended up retaining 30 pounds of fluid weight that I could not get off without the help of other medicine. Although the steroids were necessary, seeing what they did to my body led to far more issues than I could have imagined. My self-image was so distorted that I no longer thought of myself as beautiful.

Social Media

I will admit that I am on basically all the social media platforms, and it is an addiction. TikTok, Instagram, Snapchat, Facebook, and VSCO are my most frequented. Don’t get me wrong, social media has its perks — it's a way to communicate with those far away. Finding communities to which you can relate and sharing your favorite things with those you care about are great uses of social media.

However, I fell into the trap of comparison. Social media has created this “perfect” body image which is unrealistic and unsustainable for many. I’d find myself asking, “Why don't I look like them?”, “How do I get myself to look like that?”, and even “If I exercise and eat like them, will I look like them?” This is where problems arise — young girls and boys overwork themselves, compare themselves, restrict themselves from the things they love in life. When you would do anything to change your appearance, it takes the joy of life away.

Being Diagnosed With the “A” Word

For the longest time, I could not say the forbidden “A” word. I felt so ashamed and embarrassed about my diagnosis that I felt alone. I thought that people would think I purposely did this to myself and that isolated me from society. I cut off friendships and lashed out at those whom I care about most. I lost myself. The first time I got hospitalized for my eating disorder, I thought they were punishing me. I was refusing, crying, and yelling at the staff members who have helped me my whole life.

Managing a chronic illness such as cystic fibrosis while battling a constant voice in my head was draining. I fell into the restriction and purging-by-exercise cycle where I was exhausted, starving, and depressed. I did not want to do it anymore, so I stopped taking all my medications. Yes, I stopped taking every medication I was prescribed because I thought it would solve my problems. This only led to far more hospital stays and ICU trips than I could have imagined and made things so much worse. As time went on, I worked on recovery and still was not making much progress until April 2022.

Recovery

In April 2022, I decided to go back to inpatient care where I am currently recovering from a relapse. The thing I dreaded most was the thing that saved my life. Getting a feeding tube and coming out and sharing my story have been the best recovery decisions I have made. I feel strong, beautiful, and in control. Yes, I will still struggle with the intrusive thoughts, but eating disorders are lifelong and that is to be expected. As a nursing student, I am disappointed in myself for not nourishing and taking care of my body at a time when I needed to most.

Not taking my prescribed medication is unacceptable and while it made me feel like I was in control at the moment, it is temporary and leads to far more problems. Food freedom is a goal I have been striving for even before my anorexia diagnosis, and I want to advocate for those who are struggling with the same issues. Eating disorders are far more common than most people know, but many people who suffer from them remain unknown because of the stigma around them. By advocating for not only myself, but also others, I hope to help those people hiding their struggles find their journey to food freedom. I am terrified of vulnerability, but if sharing my crazy life story can help someone then it is worth every feeling of fear.

Anorexia Nervosa

I have anorexia nervosa. The words I dread saying out loud are the words that speak volumes. I have been doing a lot of self-reflection in the hospital and with the help of my team, I have concluded that if I can’t accept my diagnosis, how am I going to recover? Sharing my life with cystic fibrosis and anorexia is not easy, but it makes me feel like I am in control — not my disease/disorder. I want to advocate for those who are struggling and by posting on my social media I have had several people reach out and share their stories. Even those who don't struggle with an eating disorder have explained how proud and brave I am to be vulnerable.

I am not my illnesses, but they are a part of my life that I can’t hide anymore. And if people want to judge others for sharing what makes them unique, then those are the people you do not want to surround yourself with. I am proud that I can share my story, and I do not want anyone to take that away from me. I am the person I am because of all the things that I have been through.

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

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Emotional Wellness
Emma Selden Headshot

Emma is a lab assistant at Sparrow Hospital in Lansing, Mich., and a nursing student at Lansing Community College who hopes to one day become a certified registered nurse anesthetist. Emma is an active advocate for cystic fibrosis and has a CF walk team called Hope for Sam and Emma, named after her and her sister, Samantha, who also has cystic fibrosis. Emma lives in Lansing with her roommates, Maira, Lillian, and Shelby, as well as her dog, Ozzy. She is grateful for her support system of her family along with her boyfriend, Gavin. Follow her on Instagram, TikTok, and Facebook.

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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.