My Own Experience Through the Disability Process with COPD
Last updated: June 2023
I have noticed every once in a while in our COPD forums that many people have asked about getting on disability, and I thought I would share my journey with you.
I am hoping it could possibly help others.
When I was first diagnosed with Alpha-1, I had been working as a cook at our county jail and having difficulty doing so. I had been there for nine years and loved that job. I would cook and prep food with trustees.
Trustees were workers from jail that the guards trusted would come to spend their days helping us cook in the kitchen. Some of them were there for months, so we got to know them well.
Overcoming challenges at a meaningful job
I loved helping them to learn new skills. These included anything in the kitchen to sharing their feelings and what they wanted to do when they got out to better themselves.
For some of them, we were the only mom figure they had. I’m so sorry; I just got off topic for a bit, but I was reminiscing on the days when I could still work and loved my job.
I was sick and had a hard time lifting the big pots, cleaning, mopping, etc., and had problems with some chemicals we used. I was continually short of breath and needed more help from the trustees every day, but I had great coworkers who helped me at the beginning by working for me when I was unable.
I kept thinking to myself every day when I would walk into the building and go to the kitchen that it was a very long walk to get there. From the parking lot to the jail entrance and then to the kitchen. I had to take many breaks in between and didn’t want anyone to know that I was having breathing problems. I
I would stop halfway through the parking lot and look back at the street like I was looking at something, so no one would notice that I was gasping for air. I would then buzz the door to be let into the jail.
Every time I did this, I hoped it would take a few minutes for them to buzz me in because, again, I needed to catch my breath. After they let me in, I would have to take another break halfway to the kitchen and act like I needed to tie my shoe or was messaging someone on my phone.
Every day was getting harder and harder.
Contemplating disability and financial struggles
When I finally thought about applying for disability is when I found out that it took two years after getting disability for Medicare insurance to start. With not having insurance at all, my medical bills had been adding up, and I knew I must start the process soon.
Another thing that helped me decide was talking to other Alpha-1 patients about their process. What I kept hearing from them was that their new full-time job needed to be to take care of themself and to keep themselves healthy, which is hard when you are working full time and picking up colds, flu, etc. that is hard on us lung-compromised people and getting time off for all of those doctor appointments, etc.
The downside of applying was the thought of not having another income until disability started. We had been a family with two incomes for years and could not pay our monthly bills with just my husband's income.
I don’t know how everyone does it waiting to get approved with not enough income coming in. We had to end up moving in with my parents to be able for me to get a disability. Another downside was not getting to work anymore.
I loved my job and sure do miss it.
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Where do you stand with your COPD?