There comes a time in every adult's life when they can no longer work. Usually this happens when people are in their sixties and seventies. For many people with cystic fibrosis, “retirement” happens long before that.
I stopped working when I was 29. It was a decision I had been wrestling with for a while, but I finally did it. Nearly six years later, I do not regret my decision, but every day it is a struggle.
Here is the good, the bad and the ugly of not working with CF. First, the bad.
There are many misconceptions to deal with when you become disabled at a young age. I look healthy and capable of working, so people assume I must be lazy. Or they assume my husband is rich. Of course my house must be spotless, etc., because I can cook and clean all day.
These assumptions, coupled with comments like, "you are so lucky you can stay home all day" add to the struggle.
What people don't understand is that the reason we aren't working isn't because we don't want to. It's because we can't.
We lose a lot that people who do work take for granted.
Having co-workers to talk to every day, making work friends and going to functions are a few highlights of the job I miss.
After I stopped working, it depressed me to watch on Facebook as my former colleagues earned promotions and took new jobs.
Not working also takes away financial independence. I am on SSDI and while I am able to contribute to my family a little, it is still disheartening to know that this alone would not support me. I am dependent on my husband for support.
For the first month or even year of not working, there was a sort of vacation feel to my life.
There was no alarm clock jolting me out of bed at 5:30 a.m. to do treatments. I could wake up at 11 a.m. and leisurely begin my day. Being able to do whatever I wanted was great at first.
Then reality kicked in. And boredom. I found myself sitting around not knowing what to do with myself. There were only so many TV shows to watch, or books to read before I got tired of doing that day after day.
Even now, there are some weeks where I only leave my house once during the entire work week. My pajamas have become my office attire, and some days the only person I talk to out loud (until my husband comes home) is my dog.
But not working has its perks, too. I was able to go back to school to get my master's degree in history and graduated in 2014.
Also, I expanded my hobbies. I bake bread, crochet and sew pretty much daily. I'm learning to knit. I have a routine to my day. I exercise, and more and more, put on real clothes, and sometimes even mascara.
I never thought I'd enjoy being a housewife, but in my “retirement” years, Donna Reed has become my idol. And the best part? I get to visit my family and spoil my niece and nephews whenever I feel like it. I can travel to visit them, 300 miles away without worrying about vacation time and missed deadlines.
Retirement is supposed to be for the elderly, for those who have put in 40+ years of the 9 to 5 grind. It is supposed to be visiting grandkids and traveling with your spouse in a Winnebago to all 48 continental states.
For the CF retiree, life is not as glamorous as it seems to those on the other side. We have to retire without our spouses and our friends. But we make it work, we make it ours and we dream of the day we can come out of retirement and join the workforce once again.