Chiari Online Support Group

Explaining to my Boss?


I’m struggling with how to tell my bosses about this. I’ve told them I had an MRI and I have to go see a neurosurgeon, but I haven’t really explained things.

Here is why - I am 35 working with mostly women in their late 50s and early 60s, one in her 70s (my direct boss). The work dynamic is so different. To them, it is more important to show up to work on time and be seen than to actually be productive. I don’t know why, but it probably has something to do with the age gap I think. Maybe not. Anyway - I have always taken time off when I didn’t feel well. I’ve been here for 10 years. It was never well received, but on the flip side I’m excellent at my job, I never drop the ball, and everything is always on time.

Last year when I started to miss a lot more work I requested a reduced time base (I work 4 days now) because I knew that I couldn’t maintain the 40 hours AND do a good job. They were reluctant, but we had a tight budget that year so they let me.

They all have the mentality of, “well you don’t look sick”. They also seem to believe if you are not at work you aren’t working. In rare cases, I’m allowed to work from home, but it is also not well received.

Now I am starting to find that the distractions in the office are becoming overwhelming. I have a harder time concentrating than I ever have before. I also have waves of anxiety where I sit at my desk and fight back tears. Or sometimes I just have a low-grade headache that makes writing clearly really hard. In other words, I know my quality of work is slipping, but I cannot figure out how to explain it to them so they will understand and grant me the ability to work from home more frequently. How do you explain how terrible it really is when “you don’t look sick”.

On top of it, our division director just busted a hip and everybody is working extra hard. The workflow planning here is awful and everybody (except for me!) is always putting out fires. I am fighting my inner monolog that is telling me not to be a burden. I know I need to explain this to them soon. I just don’t want it to go badly.

Any managers out there?


Hello, KathrynP
Well your situation sounds complicated but in reality is it.?You have to take care of yourself so that can do your job to greatest ability. Your Bosses need to face the facts and everything is not about Looks anymore. We Chiarians deal with pain so much that over time we may become immune to it. We may tend to get used to some of the levels of pain. Some days I work in chronic pain and no one can even tell. I just deal with it. So going by the way you look doesn’t work. You can ask your doctor to give you documents to give to your boss to explain it without details. Just a suggestion. Best wishes. Hopefully they will understand.


Thanks Nelly! That’s what I’m hoping to make clear!


My partner is a manager and at his workplace they have someone with endometriosis not comparing the two at all.Provided your manager is kind and empathetic and you explained in this way they would and should cater to your needs.My partner knows that one of his workers has a chronic illness and when she comes in sometimes she can barely stand the poor thing so he just works the roster around so that when her flare days happen at the worst she is not rostered on.In saying that though my partner fully understands that "not looking sick’’ can be deceiving and people hide pain well.He has empathy and respect for people who are chronically ill because I am am and his best friend has muscular dystrophy.I hope it gets easier for you but put yourself first.If they don’t at least try to understand they don’t have your best intrest at heart.My previous employers didn’t even care that I had been in hospital all they cared about is that I didn’t show up to do my job.Hope it gets easier.


The upside is I have a union office job with the state so they can’t fire or let me go. I’m going to talk with my boss next week.


Unfortunately, having a union job does not fully protect a worker from losing their job. Keeps notes and I would strongly urge contacting your union representative (not the shop steward) on how best to proceed in your situation.

A manager (and a whole lot of other people) is not entitled to full details of your health status. A doctor’s note outlining your current job restrictions or what you need with NO diagnosis should be what is required. I would proceed rather cautiously in the environment that you describe. There are lots of ways to get you out of a job and without benefits or short and long-term disability if it is required.

It can be very tempting to approach a workplace with a tell-all attitude in an attempt to garner understanding and sympathy of your daily struggles. Unfortunately, people do not always understand chronic conditions and their fluctuating limitations. This is the case even with well-known conditions like MS. It is hard for people (which managers are) to understand and deal with a person (worker, spouse, family member…) who is not pulling their weight for long periods of time.

Good luck with sorting out your work place and the accommodations that you will need while dealing with Chiari


In USA, Family Medical Leave should be available to you. You can be approved for full or intermittent leave. Twelve weeks or 480 hours. After that has run out, your company may offer other leaves. Short term and long term disability can also be used. It might be good to get a good video from utube to explain your condition. I would visit my Benefits coordinator to see what is available to you.


Hi KathrynP. I wonder if you would mind sharing with me how your conversation went with your boss. I have recently been reorganized at my place of employment and now have to have a similar conversation. I’m afraid to because, while I know my boss will be empathetic, I’m afraid of him writing me off as a “high maintenance employee”.