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22 People Share the Hidden Reality of Working Full-Time With Chronic Illness

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When you develop chronic illness, your schedule can quickly fill up with doctor appointments, treatments and procedures. Any free time is often spent resting or staying in bed because of the pain, fatigue or other symptoms. For many, managing a chronic illness can be a full-time job in itself. But what happens if you work full-time on top of that?

Some people with chronic illness continue to work full-time perhaps for financial reasons (all those doctor visits, medications and treatments can really add up), the mental and social health benefits or to pursue a career they are deeply passionate about.

Although working full-time can be beneficial in some ways, it can also be incredibly stressful and both physically and mentally taxing for those with chronic illness. Common misconceptions, such as “you can’t be that sick if you work!” can be additionally frustrating and isolating.

To better understand the experiences of those who work while sick, we asked our Mighty community to share what it’s like to work full-time with chronic illness, and what they wish others understood about their situation.

Here’s what the community shared with us:

1. “It is an unpredictable struggle. My health fluctuates constantly so there are some days I get a lot done and can do it well. Some days it’s hard to even move and I accomplish very little. I wish people understood you can have daily pain and still function somewhat normally. I wish they also understood that some days my pain is going to require that I take care of myself instead of the business.” – Manda W.

2. “I constantly worry about taking vacation because I take so many sick days. But being sick is even more stressful than work. So I never really get any time off. I also constantly worry about getting let go.” – Megan H.

3. “There’s no time or energy to do anything else. Work is your life. Once you’re home, you either force yourself to shower while someone else cooks, cook yourself or lay on the lounge and don’t eat/eat ready-made junk. No time/energy for hobbies or passions, friends or family.” – Scarlet L.

4. “It is scary. I love my job, but I’m always so drained by the end of the day. I’m worried about missing days for doctor appointments. I get scared of catching colds because it takes me longer to recover than most people. I’m scared I won’t do well on an observation because I can’t always be lively in the classroom due to my three conditions. I’m scared my students will get bored or won’t like me because I’m tired a lot and won’t have a lot of energy. I am a loving person. I just feel sick all the time. I try my best.” – Faith M.

5. “What others perceive as disinterest or laziness or absentmindedness is often survival techniques/exhaustion. Placing energy where energy is most needed allows me to cope and to stay as healthy as I can. So no, I might not be your most enthusiastic worker, but I will be your most dedicated – because even on some of my worst days I still show up.” – Sabrina A.

6. “Even with colleagues, working with a chronic illness is the loneliest experience I have had in my life. I wish people knew how hard it is to show up every day and work, and be dedicated to doing my job well. I hide as much of my symptoms as I can, which just adds to the burdens of pain, guilt, sadness and exhaustion I already feel.” – Sean T.

7. “I’m literally giving you my life. I come home, take meds and go to bed. Nothing else. I’m petrified of the day when my body says enough. I’m petrified of goal-setting and planning my learning and development because my health is so unreliable and introspection and reflection terrify me.” – Lyeka B.

8. “It’s all about prioritizing where I spend my energy. I do find the routine of working a consistent schedule useful in managing my illnesses, but I definitely have to decide where I’m going to draw my boundaries and be intentional about balancing the important things in my life.” – Lyss E.

9. “It is hard, painful and exhausting. I use the last bit of my little energy trying to hide my symptoms – something I constantly wonder if it’s just making my employer even less knowledgeable and appreciative of how hard I fight to be there and successfully contribute every day.” – Lisa A.

10. “I wish people knew my condition isn’t less awful than others with the same one just because I work while they don’t. I wish they understood that working is part of my treatment – that my mental health needs to be at work. I work full-time, serve in local government and attend graduate school – all while disabled and chronically ill – and I know this isn’t realistic for everyone in my position, but I grow tired of people feeling perhaps I’m not ‘actually sick’ or questioning my condition as a result.” – Stephanie G.

11. “The hardest thing is being sick and no one believing you because you’re young. When you need to take days off, you’re seen as a ‘lazy millennial that doesn’t care about the job.’” – Misa H.

12. “Just because I am at work doesn’t mean I actually feel well enough to work. Most people with chronic illnesses have adapted to higher pain and discomfort levels than an average ‘healthy’ person. Sometimes we push our bodies harder because we have no other choice. We are not magically healed or better just because we walked through the door that day.” – Jacky R.

13. “Sheer exhaustion. When I say I’m tired or sore from work my coworkers will respond with a nonchalant ‘yeah, me too.’ I want to say no, not like I am, but it’s not a contest. But every single day I just don’t know how I do it anymore. I am absolutely drained physically, mentally and emotionally after each and every shift.” – Megan D.

14. “If someone in the office has a slight cold or sniffles I am guaranteed to pick it up and will be sick for much longer than the person who passed it onto me. And I do use all of my sick time and sometimes even more and I am truly sick, either [struggling] in bed at home or hospitalized. Just because I’m working in an office doesn’t mean I’m 100 percent healthy. I need the money to help cover my medical costs.” – Michelle T.

15. “I work full-time because I need to keep my mind busy. My sick days are not being used like yours: I schedule multiple specialists and appointments so I don’t approach work and ask for a couple of hours here and there. Annual leave for you might equal a trip to Bali; mine includes sleeping, washing and, if I’m lucky to be able to balance it, a colonoscopy.” – Erica W. H.

16. “I’m not joking when I say all I do is work and sleep. On my days off I might get a few things done, but they are filled with rest and sleep for the next work week.” – Kelly V.

17. “Waking up every day wondering if you’ll have the energy to make it though the day. Wondering if you’ll have any energy to do the housework or cook or even be awake. Having worked too hard and knowing the next day is going to suck because you did too much and the cascading effect that has on the days, weeks ahead.” – Jessica J. L.

18. “Incredibly stressful. It’s embarrassing having to have others know more about my personal life than I feel comfortable with. Trying to balance the need for time off and workload. Often it requires me to push through until I hit a brick wall and am forced to miss work. Then the guilt comes in. Also, trying to manage my leave time. It’s a full-time job just managing working [with] my illness.” – Michelle R. F.

19. “It’s not easy. However, if you enjoy what you do, it can be quite therapeutic. Being in a job you love keeps you engaged and helps take your mind off your illness. I have realized my illness isn’t going to go away and so I’ve made my peace with it. Ever since I accepted it I feel a lot better. I go to work every day with a positive attitude and try my best to give my 100 percent. Yes, there is the odd day when I just can’t get out of bed and have to call in sick, but my boss is quite understanding which helps.” – Chintan G.

20. “[It] feels like a constant battle to make it through the day at times. I do like my job and I’m lucky it’s desk-based, but it’s also mentally demanding and stressful so my fatigue and fog really fights against me. I’m scared I won’t be able to work for much longer as I can feel myself getting worse on a weekly basis almost.” – Lesley B.

21. “It’s difficult to concentrate. I’m always tired. I’m likely to mess something [up] so I will repeat it back to you to confirm it’s correct.” – Tierra N.

22. “I’d say it has both positive and negative effects. There are a lot of health benefits with being able to work. It gives me a chance to socialize and not isolate myself when the pain and fatigue are high. It keeps me moving. I am able to balance both resting and walking. Then there is the flip side. Just waking up, taking my meds, getting dressed and getting there takes two times as long as it did before. Throughout the day my pain, fatigue and other symptoms rollercoaster up and down. By the time I get home I am done. It is physically and mentally exhausting, but I feel it really helps me personally in the long run.” – Melissa S.

Originally published: August 31, 2017
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