Can you work with a chronic illness? I might need a sugar daddy...

 \Post 06\ 03.01.2025

photo credit: reddit, r/chronicpain

Hello Everyone!

I hope you all are doing as well as you can be, considering… you know.

I interrupt your regularly scheduled programming to bring a question to my readers – how can someone work while having an unpredictable, invisible, chronic illness? No, seriously. I thought I was able to do this, but after over 3 years of struggle it may be time to explore alternative options like finding a father, of the sugar variety.

I recently received a “Needs Improvement” performance review due to lack of productivity and the inability to stick to a set schedule. I was accused of lying about being at work on time and lying about the unpredictability of my condition. I was also accused of being unprofessional because in the FOUR YEARS I worked for this company I violated dress code TWICE accidentally (I wore linen, knee-length shorts that I’ve seen so many people wear that it would take more than twice all my fingers and toes to count, and denim on casual Friday while dropping off something to my team in different part of the hospital but walked through a waiting room directly to the office, the only way to access it). Twice in four years. I made a joke about leadership wearing denim while seeing patients all the time and apparently that set my manager off.

WHAT’S WORSE: those I worked with said I shared too much about my illness/disability and talking about those things makes them feel unsafe at work… AND that I did not volunteer to cover enough.
This. Was. Shocking. I would never intentionally make anyone feel unsafe; I would never want that. I hope they know that was not my intention.

Maybe it's true when they say, “those people at work are not your friends...”


Considering these are the same people who ask me about my illness and how I’m doing, ask for recommendations for doctors for their own medical issues, and often initiate personal conversations about life in general, I felt some type of way if I’m being completely honest. My “team” did not give a f*ck about me and clearly felt I did not add much value.

I felt betrayed.  I know that’s obviously super dramatic.

I EVEN QUIT THE SOCIAL COMMITTEE AFTER HEARING THIS 💔

NO MORE BIRTHDAY CELEBRATIONS OR COOKIES FOR ANYONE! 😤

Sorry, that’s even more dramatic lol.

~Anywayyyyyy~

When it comes to sharing information about my illness/disability, it is in hopes that maybe my team will better understand why I am not jumping up to do specific tasks like:

• Walking across the hospital (a 15 to 25 minute walk each way depending on how my pain is that day) to see a patient that is not considered “high priority”
• Offering to cover when they are out of office because I am also out of the office
• Pushing back my break time because I have a scheduled medication to take or because I have to use my lunch break for a doctor’s appointment

Instead of volunteering, I always let the team know to reach out to me for help if they need it. I even brushed up on skills for other studies and shadowed my peers so I would be readily able to help with any study when they asked. But, because I did not volunteer, it’s poor performance on my end. Really? How am I supposed to know if someone needs help if they do not ask for it? I will no longer be sharing. If they don’t get it, oh well 🫰🏿✨

What makes this even more disheartening is that late last year my manager revoked my work from home privileges because she believes I am solely at fault for a data backlog issue, despite this backlog having built up over years of the previous employee in a completely different department not performing tasks accurately, being disorganized and not completing data. This is by no fault of her own – she was thrown into the study without guidance and it was added on top of a workload that was meant for more than two people to handle – so while this was annoying, it was also understandable.

Side note: the interim study lead said there really was no need for a sense of urgency because the backlog is so long, and the study sponsors are very relaxed when it comes to data completion.

But, when my manager said that the study was a priority, despite her admitting to knowing nothing about the study processes, how much data was back-logged, or the extent of the disarray the study was left in, I took all steps to remedy the situation, like asking for help, talking to the person in charge of the study, asking for the lead to communicate with the study sponsor, etc. However, this same manager said she expected for me to perform the duties of the study lead to remedy the situation. 

This begs the question – why? Why, it’s because I am a seasoned employee who is expected to do more. 

Now wait a minute – that’s not fair, is it?

I will mention that shortly before she blamed me and me alone for the data backlog not being completed, I did tell her I was pursuing hospice care at the end of the year as my health issues were getting worse. 

She was angry with me and said the person she knew I was would never give up like that.

Back to the point: my manager neglected the fact that I was a part of a team because it was convenient. Each member has responsibilities and a team will work best when we can all complete our responsibilities – but it’s never a team issue if something does not get done on my team, it’s a me issue. I guess there is a me in team.

I asked for help and did not receive it; but the reason I was not able to receive help was because the study lead asked for help too from… the same manager! And guess what – she did not receive the help she asked for either, leading to overwhelm and lack of confidence in her ability to perform her job and even caused her to doubt whether she deserved this job. Isn’t that sad? Constantly asking for training and resources to be better able to perform your job functions and not receiving it has to be disheartening. But it’s on brand for this “team”.

So yeah, that’s how this started... Now fast-forward to the last week of February, the last week of Black History Month of all months.

I was given that “Needs Improvement” performance review on Thursday morning at 8:30AM. And towards the end of the review my manager starts sobbing. Yes, you read that correctly. My manager sobbed while giving my performance review. Girl, if it was heartbreaking to write it, why did you in the first place? Clearly something is not making sense if this is your reaction to what is happening. And she had the nerve to say I was unprofessional because I unintentionally violated the dress code, but she is full on breaking down, crying because of having to give this performance review.

My response? Get ready, because I stumbled upon some confidence that day and said:

        “I wish I could agree with your assessment, but I do not, and it is very disheartening to read. I notice that you did not             provide context to the examples of “poor performance” included in this document and even omitted entire                             conversations and interactions. I know that the person I knew two years ago would have understood the joke about             the denim. I also know that we have had conversations about how my productivity faulters when my health is in a                 worse state; you are aware that I am actively dying? I understand why you feel the need to do this, and if this is what          you have to do, then so be it. If you want me to leave, I can leave. But sometimes, just because you can do something         does not mean you should. Sometimes, you need to be a human first and a manager second. You are clearly                        distraught, and I think we should finish this at a later date, maybe sometime next week. Thank you for your honest            feedback.”

I hobbled back to my office and then I cried. I felt so defeated. Here I am bending over backwards, limping and hobbling to see patients all the way across the hospital because no one else will and it is still not enough. I’m staying late nearly every day to work on data that NO ONE ELSE WILL TOUCH and it still is not enough. I was gone for an entire month due to illness and not a soul touched the data. Nothing was done. There I was, in a hospital bed ready to bust out my laptop because I was concerned that no one was working on study data in my absence.

What my boss left out of my review is that I was at work on time but she made it a rule (for me alone) that I needed to be sat at my desk by 8:00AM every day and logged on. On the days I was not I explained I had to unclog my feeding tube, go to the bathroom, or treat a low blood sugar. However, whenever I explained this to her, she said my feeding tube could not possibly get clogged that often and if I will need to use the bathroom or treat my blood sugar that I needed to get to work earlier or have a later start time.

But here’s the thing: CHRONIC ILLNESS/DISABILITY DOES NOT FOLLOW A SET TIME SCHEDULE.

🔊 🔊 🔊 🔊  TURN ME UP: It.👏🏿 Is. 👏🏿 Unpredictable. 👏🏿  

Are y’all hearing me?? Someone (with a chronic illness herself) is telling me that my chronic illness/disability/RARE DISEASE needs to be on an 8:00AM to 4:30PM schedule every single day. Regardless of what time I start, unpredictable is unpredictable. 

It makes me feel a million times worse because the only reason she started enforcing this policy for me was that people complained that I was receiving special treatment. Well – yeah. If you had an unpredictable, sometimes disabling condition I would hope that your manager would show you some grace and lenience.

Well, my formerly understanding team is getting tired of my chronic illness’s bullsh*t.

Quite frankly – I am too.

Wellllll, any chance at work flexibility is gone due to this. 

Should I try to salvage the only thing allowing me access to (meh quality) healthcare? Obviously, I don’t have a choice except to stay until they maybe fire me. Here I am worried about how the team will complete all the data while they could care less about me (or they care too much???? Not entirely sure.)

There are flexible, remote positions out there for those who can work. I know they are out there because once upon a time I worked in one of those positions. Don’t lose hope if that is something you want! I believe in you! I care about you! I want you to enjoy life!

You deserve the world and then some, you know. ❤️✨
xx