15 Things I Wish I Could Tell My Employer About Working With a Chronic Illness

Anyone who is chronically ill and trying to maintain a job, whether it be part-time or full, realizes the many unique challenges us spoonies face when it comes to self-care, work and social life balance. Some days, you have to stay home and rest. Others, you can tackle your to-do list with ease. When your to-do list is small, you can sometimes squeeze in some prep for the next time you may need to be out ill. However, that is not always the case. This is what I wish I could tell my employer when I am both home sick and in the office on a seemingly normal day.

1. The guilt I feel every time I call in sick.

I worry I am letting you and my coworkers down. I know it means I cannot do my best work and that sometimes, my responsibilities then fall on your shoulders or my other coworkers. I wish more than anything that I could always be there or better prepare for my absences.

2. The disappointment I feel in myself when I need to take time to rest.

I used to be normal. I had a normal life, sometimes extraordinary life. With plenty of energy and time to get things done and do them well. Now, I feel like a shell of the person I used to be. Unable to do things the same or how I would like to. It is truly hurtful and difficult to realize this.

3. Being chronically ill is often unpredictable.

When I know an absence is approaching, I do everything in my power to ensure my work is complete or covered in my absence. However, when I am rushed to the hospital or become ill suddenly, I cannot help it. I wish I could change it. This illness stops my life in its tracks and I am helpless to that. I wish I could tell you I will only be out for two days, but, I often do not know how long I will be down for the count.

4.  I keep a pillow, blanket and eye mask in my car at all times.

I often spend my “lunch” napping or lying down in my car because I need that boost in energy to make it through the day. I then come back to my desk to eat, if it is a good day, and continue working while eating. This is often why I don’t go out with coworkers. I want to spend time with you all and feel included, but, I have to prioritize my health and the quality of my work over a social lunch break. It really bothers me and makes me feel disconnected from everyone.

5. Sometimes I am more productive at home than at the office.

If I am having a rough day, it is much easier on me to stay home and in my PJs with my laptop to work on things. The stress of getting ready, driving and sitting in my chair with fluorescent lights drains me and often leaves me more miserable than productive in the office. Letting me stay home but available and working is often better, not just for my health, but for you because I can be more productive.

6. I wish I was normal.

I don’t think I need to explain this, but I would give almost anything to work 40 hours a week, health-worry-free and be a normal, dependable, functional adult.

7. The toll working full-time takes on the rest of my life.

I am often left bed-ridden or couch-locked after a full day in the office. This takes away from family time, a social life and any hobbies I had. I have to choose between work and exercise. Work and celebrating birthdays. I wish it wasn’t that way, but the reality is that my body can only handle so much in one day. Eight hours of work, getting ready, commuting, etc. is all my body can handle, sadly. Working for you is my main priority, despite how much I may be absent or need to be out sick. It may make it seem that work is not my number one priority, but I can assure you it is.

8. Maintaining a job makes me feel closer to “normal.”

Without this job, I would be sitting at home feeling useless. Which I already do on a regular basis and every time I call in sick. I need to feel useful. To have a purpose other than breathing that day.

9. How difficult it is to manage doctor appointments, procedures, testing and medications.

I try to schedule things before my work day begins or after it ends. I also try to purposefully schedule procedures that require down time to recover on Fridays or over holidays so I don’t have to miss as much work. This means I often sacrifice my weekends and holidays, a time I could be resting and recharging, to healing so I can be hopefully be ready for work come Monday.

10. I have nightmares about the day you fire me.

I feel it is inevitable. It has happened before. Losing a job due to my health and the demands it puts on me. They just find another way to let you go without it being discrimination. My favorite reasons are “does not meet expectations,” “declined work performance” or “lack of motivation and focus.” Despite me meeting 99 percent of my deadlines and completing tasks in a timely manner and with high quality work, the one day or project I may drop the ball makes for the perfect scenario for you to let me go and I stress about it every time I take a sick day.

11. Being chronically ill affects my memory.

I’m not as sharp as I used to be. If I don’t write it down, it may not get done. I might think I have completed something when I haven’t and I apologize for missing things. I do not do it on purpose, it truly is a mistake and I am sorry for small details that may slip through the cracks.

12. The side effects of my medications can be brutal.

Depending on the cocktail I have to take to manage my symptoms, the side effects can be just as debilitating as the illness itself. I have been bed-bound with dizziness and unable to walk due to losing feeling of my legs. Unable to drive or work because my vision is so blurry I cannot see. Running to the bathroom every few minutes to vomit or erupt from the other end. Fainting because my blood pressure or sugar tanked. Going five or more days without sleep as steroids wreak havoc on my body. Please don’t assume that just because I am on medications, I will be better or cured.

13. Just because I am here doesn’t mean I am pain-free or having a good day.

It simply means that, for the time I am here, I was able to be stronger than my illness. My strength wears out, though, and how you see me at work can be completely different than the person I am once I arrive home, depleted.

14. How many times I should not drive.

When I take certain medications, they come with the warning of “do not operate heavy machinery” – that includes a car. However, I sometimes disregard this to come into work. It makes me feel horrible and guilty. What if something were to happen while I was driving? A bad pain flare? A fainting spell? What if I cause an accident? These things scare me daily, but, I have to be in to work, so I make it happen. Whether paying for an Uber, Lyft or taxi or requesting loved ones or friends to drive me in, I make it work. But, it costs me time to arrange things and money to pay for additional modes of transportation.

15. Your acceptance and understanding mean the world to me.

There is nothing more reassuring than having someone who knows and understands your battle and tries to be accepting of your limitations. I appreciate when you tell me to feel better, or not to worry about something that can wait. I am grateful when you allow me flexibility in my schedule to ensure I get the care and rest I need. I promise that when I am at work, I will give you 110 percent and maintaining this job is my number one priority. I will come in early or leave late to try and accommodate appointments and make up for things I may have missed.

And finally, thank you and I am sorry. I know you expected to hire a healthy 20-something when you interviewed me and my subsequent filing for FMLA might have been a surprise, so I apologize for my looks and attitude being somewhat deceiving. I am grateful you took a chance on me and I am sorry when I cannot be there. This job makes me feel human on days when my illness makes me feel less than that, and for that I am grateful.

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Photo via Siri Stafford on Getty Images