Getting to the point in my life where I had to realize and accept that I was disabled was very hard. It was a place I did not think I would find myself. I always assumed that once I finished college I would work and live my life to the fullest doing the things I always wanted to do. Yet, that was not what my life with CF would entail. I was on public assistance from a young age and used food stamps and a state medical card because my parents were struggling to pay for my medical bills. When I aged out, I had to transition everything into my name and get on Social Security Disability Insurance because as much as I tried, I was too sick to go to school or work. I tried various jobs, but at that time nobody was understanding about my situation. So, I got fired a lot because I never knew about disability protections in the workplace. I was in this situation I couldn’t get out of — at least I couldn’t figure out how to get out of it.
Living on a fixed income is a balancing act where you have to decide what’s important and what isn’t. But that’s subjective because what we each find important is different. Having a budget is your best friend, and sticking to it is even better. Self-discipline is very important.
At the end of every month, I sat down at the table and calculated all my expenses, and whatever money I had left I saved in an envelope and would not touch. Kind of like an emergency fund or fun money. On the first of every month, I would pay the rent, gas, electricity, phone, internet, and other bills. Residual money would be used for gas or the bus or anything else that I needed, like personal items.
I also researched and took advantage of programs that helped cut the prices of things I needed. There were programs for people on disability to get cheap internet, rides to the doctors, free assistance with medications, and nursing care at home. I used cheap cell phone services and luckily was able to use my siblings’ accounts to watch Netflix and such. Amazon Prime had deals for those on assistance, so that was inexpensive. My building has affordable laundry machines, so I did laundry there every weekend, which was cheaper than the laundromat. I also utilized grants and special funds and programs to finish college without debt. I looked for free events when I wanted to have fun — fairs, free concerts, picnics, or my local zoo. I also got low-cost veterinary services for my pets. It took a lot of legwork and research, but I always kept myself above water in some shape or form.
During this time, I had to swallow my pride and stop being embarrassed about my situation. It was not my choosing, but I did the best I could. I did not ask to be sick, and I had to realize that while I was born into an illness that changed my life, I shouldn’t be ashamed to seek help if I needed it. I am a very independent person and I despise asking for help, but I had to learn to ask for help because I need it sometimes.
We’re all in different stages of our CF. Some of us can work and thrive and don’t need to rely on a fixed income. Some of us can live with family members and don’t need to be on any assistance. And some of us need to live on a fixed income, whether we’re living alone or with family.
All of us can have financial struggles because living with CF is expensive — medications, surgeries, rehabs, after care, and copays. It can all be overwhelming, but by budgeting, asking for help, and just doing your very best, you can make it through one day at a time.
Living with CF is hard, and it’s taught me to appreciate that I don’t need what others have in order to be happy. I learned to appreciate what I do have. And while I had moments where I cried and broke down at how unfair my life was due to my illness, I learned to also find myself and be strong. I have a home; I have food and the necessities I need. Yes, they were from the dollar store or thrift store or given to me by someone, but I appreciate them so much because they are still mine.
My circumstances taught me to save and be hyper-aware of my spending. Now after over 10 years of struggling, I can breathe a bit easier. I still live frugally because it’s what I am used to and it’s what I know. These days, the most money I spend isn’t on myself but on my animals because back when I cried and felt overwhelmed, their snuggles and love helped me through it all. My husband also helped me mentally see the positives and held my hand throughout everything CF has thrown my way. I will never forget where I came from and what I went through to get where I am today.
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