If you have a chronic illness, you may know what it feels like to be a “full-time patient.” Between the physical and emotional symptoms, constant doctor appointments and numerous tests and procedures (not to mention keeping track of it all), being chronically sick can become a full-time job in itself. You may find yourself needing to cut back on hours or stop working altogether due to the demands of your condition.
Although this may be a necessity for your health, other people don’t always understand why you’re not working. They may have misconceptions that you’re “lazy,” “on vacation” or “so lucky!” but as those of you with chronic illness know, this couldn’t be further from the truth. By hearing what it’s really like to be a full-time patient instead of a full-time employee, hopefully others can begin to be more understanding and less judgmental. So we asked our community to tell us the secrets most people don’t know about not working due to illness.
Here’s what our community told us:
1. “I’d much rather be at work. People look surprised when I tell them that, like I’m on some luxury vacation and they can’t understand why I would ‘choose reality’ over said vacation. They have no idea that I’m home because it’s physically too much for me to be anywhere else. So yes, I’d rather be at work because being at work means I’m healthy again.”
2. “Enjoying the good days can make you feel really guilty. As though the energy and rare moment of being functional should be used to do something ‘productive’ rather than doing something fun. Logically I know that one good day doesn’t mean I have to ability to hold a job, but mentally I feel like I haven’t ‘earned’ the right to do the fun stuff.”
3. “It’s not ‘fun’ and I don’t have ‘a multitude of free time.’ All my time is spent being sick while trying to perform the most basic of daily activities. I wish I had the luxury of being ‘lazy.’”
4. “‘Work’ is a loaded term. The bigger picture: Working outside or inside the home for yourself or someone else, including housework/yardwork, etc… In my case, my full-time job is taking care of myself and medical needs, aside from low-key housework and the occasional low-key yardwork. Also, we don’t get ‘time off,’ a ‘break,’ or ‘vacation’ from our illnesses, and subsequent appointments.
5. “I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my body than I needed to, because it was such an important part of my life. I lost 95 percent of my social life when I left — being single and at home all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon — there are only so many episodes of ‘Law and Order: SVU’ a person can watch.”