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7 Mistakes I Made While Working with a Chronic Illness

I’ve been living and working with a chronic illness since August 2010. It hasn’t always been easy, and I’ve learned a lot along the way. The biggest lessons I learned happened when I relapsed after a three-year remission.

My relapse started while I was on maternity leave, but I didn’t realize anything was wrong until my body hit a complete wall after I returned to work. Here are the seven mistakes/lessons I learned during this time.

1. I didn’t listen to my body

When you have a chronic illness this one is HUGE!

When I relapsed, my body was literally telling me in every way it wasn’t functioning and I wasn’t listening.

It was telling me:

  • I needed to sleep. When I couldn’t move my legs when my alarm went off, and I was literally peeling myself out of bed even an hour later.
  • I needed to go back on a muscle relaxer when my paroxysmal dystonia was almost constant.
  • I needed to take time off work because my brain fog was causing me to make errors that I never used to make.

2. I felt guilty about taking the time off I needed

When I relapsed I tried my hardest to work forty hours each week but I failed every week for months.

I think I knew deep down that I should take time off but I felt so guilty about it because I’d just come back from maternity leave. I didn’t want to leave my coworkers hanging.

That guilt kept me from doing the one thing I really needed to do to take care of myself. It was a hard lesson learned. And I try not to, but I sometimes wonder what if I had taken time off in the beginning, would I be as bad off as I am now?

3. I was in denial about how bad I really was

This was another hard lesson. Coming to terms with my condition. In addition to the guilt, I was in denial about how bad off I really was. I didn’t want to believe that I had only been in remission. I didn’t want to believe that I may have been predisposed to this condition.

Why might you ask? Because there was a point in my journey where I was told by two doctors that I should make a full recovery. I had continued to improve for three years. I couldn’t be having a relapse? It’s not possible, but it was.

It took me eight months, EIGHT MONTHS, to finally admit that this was a chronic problem, and I needed to go back on medication and reduce my work schedule.

4. I was stubborn

Two months into my relapse, my neurologist told me my symptoms, specifically my dystonia, were very active again and suggested I go back on a muscle relaxer.

I told him no because I was nursing my baby and I couldn’t take the meds if I wanted to nurse. I wanted to nurse him just like I nursed my first baby.

No one or nothing was going to stop me from nursing my baby. The hell with my health, I’m going to nurse my baby! Sigh. Not the smartest decision I ever made.

5. I didn’t listen to my family’s concerns

When you have more than one family member telling you they are concerned about you or you need to put your health first, it is probably time to take a step back and really evaluate your health.

My sister who lives multiple states away could tell that I needed to take time for myself, and we don’t even talk on the phone that often.

At the time I knew I wasn’t doing great but with my brain fog on 100% of the time, I couldn’t evaluate myself properly. When my brain isn’t working, it can’t tell me how bad I’m functioning. That’s when I should have listened to others who were on the outside looking in.

You may think you’re going to tough it out, and maybe you can but at what cost to your health?

I created a check in survey designed to help you determine if you’re functioning at the level you think you’re functioning at. You can check it out here.

6. When my work performance started to decline, I still didn’t make the connection that I needed time to rest

I was someone that always met or exceeded expectations on yearly reviews but all of a sudden I started tanking on my job performance.

This was NOT normal for me. I left for maternity leave on my A game and returned with a less than stellar performance.

This should have been a major tip-off that my brain was not functioning. Yes, I was sleep deprived but when I was sleep deprived before with my first baby my job performance never tanked.

Another hard lesson learned!

7. I thought my boss was my friend

Ugh, this one gets me every time I think about it. When I relapsed I was going on seven years working with my boss. I wouldn’t say we were best friends or even buddy, buddy. But I at least thought that he cared about me on a human level.

I was struggling hard and my boss knew it but he didn’t seem to care. He didn’t seem to care about anything except that I wasn’t producing at the level he wanted. It was a real blow to me and our working relationship started to suffer.

Don’t assume your boss is your friend. He/she may only be friendly to you because you’re producing good work. But once you’re unable to produce at the same level you once did, their attitude could quickly change.

I say this because if I had thought this way, I may not have taken the actions and the things my boss said as personally as I did.


While I called these mistakes in my headline, I really see all of these as learning experiences. Yes, they were all learned the hard way, and no I don’t anticipate making these same mistakes again. But they were mistakes that needed to be made so that I wouldn’t make them again. It also gave me learning experiences to share with you, in hopes that you could avoid these same mistakes or at least be on the lookout for them.

Have you made any mistakes, I mean learning experiences 😉, while working with a chronic illness? If so post them below.

working with a chronic illness | chronic illness | invisible illness

Sara at Managing Chronic

Sara has worked in corporate America for almost 15 years, and she's worked the last eight years with FND. Her FND comes with paroxysmal dystonia, chronic fatigue, brain fog, sensory overload, muscle pain, and more. She is currently a part-time career woman, a mom and a wife.

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  1. Here I am making these same mistakes!

    1. Mity – I know how you feel! Working with a chronic illness is hard to navigate at times. If you ever want to chat about strategies to help with work, please feel to set up a free jump-start call.

  2. Texas says:

    I wish I could’ve quit my job sooner, but I didn’t know that educators has disability retirement, and I was single, so I didn’t have a backup. I qualified and have been retired for almost 3 years now.

  3. Maria Weston says:

    The day I found out I had Crohn’s disease, I filed for an FMLA. That is the only thing that saved my job. My boss put in my review about my attendance, I went to HR and they made him remove it because of the FMLA. Unfortunately now my situation is worse and I have fibromyalgia and also severe depression, anxiety disorder, and found out I am ADHD, and have been probably my entire life. Anyway, I’m fighting for long term disability and Social Security. It’s a nightmare but it’s something I have to do because I can not work, no matter how much I’d like too.

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