31 Days of CF: Holly’s Story
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Day 7 of 31 Days of CF Topic: Disability and marriage We invited Holly to talk a bit about her experiences: Growing up everyone gets asked, “What do you want to be when you grow up?” From childhood through high school my responses ranged from a popstar, nurse, teacher, and news broadcaster. I never imagined would happen is being medically disabled in my early twenties. I attempted to take courses at a local college. However, my health decided to get in the way of finishing a degree. Instead, I started working part time, selling and doing makeup at a local beauty store. I would work for a couple months, get sick, get admitted, complete home IV’s, recover, go back to work, repeat. This cycle continued until I decided to just focus on my health for a while. About a year later, I was approached with the offer to work a couple days a week as a receptionist at a spa. I took the job with high hopes of being able to handle the work load, being it was only a couple days a week. Less than a couple months later, I was readmitted to the hospital and officially withdrew from the position. Although I really enjoyed the job itself and the people I worked with, my health could not handle it. At the age of 23, I had to stop working. The embarrassment is something that I still struggle with. Meeting new people and having to answer the dreaded question, “What do you do for a living?” haunts me knowing the conversation will either end with looks of judgment or pity. Both sides never fully understanding what I go through on a daily basis. However, the alternative is much worse. With my health declining very every time I work, disability became my best option. Today, I am 24 years old and married to the man of my dreams. However, marrying him last year also meant losing my access to disability. Everyone has different priorities and suggestions around this matter. We were advised to not legally marry so I could keep my benefits, but that didn’t sit well. It was an easy decision on my part, but it has consequences. While most people will never understand, I can sleep well knowing although it may put us at a disadvantage financially, it is an advantage for my health!