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.”
6. “It wasn’t a party. Contrary to what some may think, surviving being in that much pain was indeed a whole lot of work – even if the reward was not monetary. Someone made the mistake of using the word ‘lazy’ to me and my husband made damn well sure to explain exactly how wrong that was.”
7. “Disability is a full-time job. I’m a professional patient. I fill out paperwork constantly. I have to prove that my chronic degenerative disease hasn’t suddenly gotten better. And my income is less than half what I was making but my expenses are the same, higher if you figure in all the healthcare copays and expenses. And no, I can’t walk your dog, watch your kid, go out shopping. Some days I’m barely managing to shower and if by chance I’m having a good day I have my own dog, a backload of housework and grocery shopping as priorities.”
8. “I think many people see me and because I wear makeup and fix my hair, I don’t look disabled or ill. They don’t see me on the days I can’t get out of bed. The days I need help to take a shower or dress myself. I try to be positive even when I’m in pain. I have a disease that gives me vertigo and left me deaf in one ear, partially deaf in the other. I have had spine issues. People don’t see me vomiting into a waste basket while sitting on the toilet… I suppose I’d tell others that many disabilities are hidden.”
9. “Trust me, I would love to hold down a regular job. I would love to be able to use the degree I will be in debt for the rest of my life for. I would like to get to the end and feel like I accomplished something rather than live day to day.”
10. “You can have a debilitating illness and be legitimately medically disabled and still denied disability benefits by the government. You can be homeless due to your disability preventing you from working and they often still deny you (thankfully I am not homeless due to supportive family, but my lawyer’s office works on cases like this).”
11. “No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem. When you can’t work anymore, it is very hard to see yourself as worth something to people. You feel isolated because everyone is so busy with their lives they don’t have time to come and see you. They can meet other friends out, but you can’t do that. If you do go out, you pay for it later. It’s as hard mentally as it is physically.”
12. “I’m bored out of my absolute mind. I loved working and until my health got really bad, my job actually took my mind off it for the most part. Having nothing to do all day now drives me absolutely crazy. I hate doing nothing but my body is rarely up for much else.”
13. “The guilt I feel all the time. I feel like I’m not contributing financially to my marriage and our family. My husband reminds me that he would rather have me around than have me try to work a lot and wind up in the hospital. It’s not even like I end up doing all the housework when I’m home all day. Sometimes getting one thing done is a monumental achievement. And being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun.”
14. “The isolation from limited human interaction is heartbreaking. I feel like an expert level clinger when my husband comes home from work or I finally see a friend. The desperation is soul crushing. I honestly would work telemarketing just to be able to talk to people if I could consistently work up the energy. To be a people pleaser devoid of peers? It strips you of your personal identity.”
15. “When I cannot work I cannot just decide that I can return. I have to wait until the symptoms subside enough to allow me to perform basic work functions. No amount of positive thinking or appearing to do better will make me functional in a way that it is beneficial to those paying me. I’m doing better now and still cannot work full time or on a regular schedule. It is outside of my control. It’s not OK and yet I have to accept it. I’m lucky to have a flexible schedule and work from home.”