Guest Voice: Hiding CF exacerbations so people don’t feel sorry for me
How can I get people to understand my disease without pitying me?
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People say you don’t know what happens behind closed doors. Society only sees what’s on the outside.
For those of us with cystic fibrosis (CF), you may see us cough a lot or become out of breath when exercising. Otherwise, though, it may be easy to think, “Oh, CF isn’t that bad. They don’t look or act sick.” But I don’t want to be known as “sick,” which is why I hide.
As a CFer, I could wake up feeling great one day, but on other days, I could wake up feeling like I have the flu. This can be referred to as a CF flare-up or exacerbation. For me, these flare-ups can consist of:
- Low-grade fevers
- Excessive mucus (even more than the usual excess my lungs already produce)
- Increased coughing
- Chest pain
- Pulling back muscles from coughing so hard
- Amplified fatigue
- Body aches
- Extreme shortness of breath
- Headaches
- Little interest in interacting with society
Despite this, I still have to function in society. Some days, I feel so bad that I take ibuprofen around the clock just to get through the day. I am not able to just wake up, brush my teeth, and go about my day. Instead, I plan my schedule around breathing treatments, sleep, medications, and doctor appointments just so I can live my life.
During a CF exacerbation, I may have to cancel or modify my plans, whether it’s work, school, or spending time with friends. What’s frustrating is that, because I hide my disease, people often don’t understand or think I’m making things up. The truth is that the average person has no idea what I go through daily.
When I’m in the hospital, I try to keep it to myself. I only tell my close friends and family. I’ve found that if I tell people, I get responses like, “Oh, I’m so sorry,” or “When will you get out? You’re not sick.” But I don’t know when I’m getting out of the hospital, and I don’t want people to feel sorry for me.
I sometimes wonder how I can get people to understand my disease without feeling sorry for me. I’m not this poor girl with a life-threatening illness; I’m just a girl who tries to live my life to the best of my ability, regardless of my situation.
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Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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