I have a lot of fun joking around with my co-workers and some of the people I work with like to comment repeatedly about the fact that I work such limited hours. I often hear:
- “It must be nice to only work one/two days a week”.
- “It must be nice to not have to work a regular job for a living”.
- “Why not get a real job like the rest of us?”
I always take it in stride and have fun, and make joking comments back and my favorite comeback is usually, “If you take my illnesses then I would gladly take your work schedule”. No one wants to trade, however! I had a conversation today with one person who said he has a “hard time” believing in the illnesses that I have. He said everyone has “chronic fatigue” and when he was a kid there was no such thing as “fibromyalgia”. People were just in pain. He said that he was tired too when he left work.
I tried to explain to him the difference between what the illness “Chronic Fatigue Syndrome” is and what normal fatigue is. He still didn’t get it and probably never will. I finally just said, “If you lived with me, you would believe it.”, and I walked away. When someone says they have cancer, multiple sclerosis, or another disabling disease, no one questions it. When we talk about our illness, it’s like we are constantly defending ourselves over and over again. Then when I went on break I found myself feeling “less than” because once again someone doesn’t get it.
But then I had my own little pep talk: I know who I am better than anyone. These people I work with see me a few short hours a week. They haven’t known me over the last 20 years. I’m proud of myself for trying. I work when I’m able to work, no matter how little it may be. When I can’t, I can’t. I think that ought to mean something. None of these people saw me working 10 – 12 hours a day or longer, 6 and 7 days a week for years. They have no clue what my life has been like, what I have been through and I don’t owe explanations to anyone.
I know there are people I work with who see that I try and that I work hard even with the physical restrictions that I have. But I’m through with the days of feeling like I have to prove that I can do it all even though I physically can’t. I’m not taking that road again for anyone. It’s not worth it. My family needs me too much and I will not ruin myself to prove anything to anyone anymore.