Chiari Online Support Group

Employers view on chiari disability

I was diagnosed with type I in 2018. I’ve always knew something wasn’t right about me. The learning disabilities, the no coordination, the horrible headaches. In 2000 I had an event that left me with no answers just doctors treating me like I was making it all up.
Now, on to present time… 49 and having issues with life. My inability to multi task now. My decrease in mental processes. The increased inability to control my vocals cords or swallowing.
All of this is affecting my work. I’m not getting much understanding in this arena. I’m too young to not work. It’s just me. How do I explain this to my employer? I’ve already had one employer use it against me. Any ideas?

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from my experience I would say as very little as possible to your employer. they get scared because they do not understand. once you mention it affects your mental state they turn off and start thinking can this person do the job, are they going to be a burden on the work place. remember you really don’t need to tell them anything but, im sick and cant come to work or I have a doctor apt and need time off…I found filing fmla did not even help in my situation. 2 reasons, I told them too much at first, and my direct boss did not care, second being a right to work state she was able to let me go.
advice to help with your issues: try your best to cut out stress. once I was let go and accepted it, life stress was cut dramatically and I started to feel much better.
good luck to you.

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Say as little as possible - I agree and have said that here many times myself. Take on less stressful and less technical jobs (less noise, less interaction with others - however that looks within your wheel house of marketable skills) so that you can achieve higher success on days when you are not at your peak. Do not take on more responsibility because you do so well on your good days. Use other outside responsibilities as an excuse rather than your health. Underemployed would be a good word to describe the best type of job situation for people with Chiari symptoms affecting their ability to work.

Employers are not there to understand and explaining what Chiari is and its limitations is not generally helpful. Once you are on an employers radar for what they see as mental health and not able to do the job, it is only a matter of time before forced quitting time. Fighting a legal battle about Chiari in the work place is difficult, time and energy sucking, and gives a poor outcome over all.

Keeping a low profile within a job that fits your new abilities works well with Chiari. This can take some effort to define what that would be, look at the paycheck that goes along with your new stamina and mental capacity, and making budgeting decisions within those parameters. Chronic illness is a big destroyer of wealth and creates a new normal that is difficult to define and accept.

I wish you the best of brainstorming life and work. Take your time and do not succumb to fear and panic. New ideas and creative ways of working are possible but need a pause in frantic thinking to reveal themselves. Think big. Think different!

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Hey there im a young person im 26 so im not sure if im able to relate to your set of circumstances I had my op in 2016 and I started working last year.I have found through my workplace that if Im honest and transparent with my employer and keep the lines of communication open they are super supportive I have a very unique circumstance as I am a preschool teacher however I do believe that they should not set you up for failure and lower expectations for you.Help them understand that this isn’t your fault and beyond your control you may feel like you are doing so little but it feels like a lot.My boss always says “whatever you feel you can do that is enough just tell us”.I know its tricky being in the work place sometimes it can make you feel incompetent.I mostly go to work for the community side of things as I suffer depression.If you make a mistake that’s ok.But in all honesty if your workplace doesn’t understand or at least try to understand its not the right environment for you.Because I can tell you from experience when we are supported we flourish as chiarians.I know I did so much more than I was expecting long story short we need support! in the workplace.

I am 58 and Chiari 2 with Hydrocephalus was discovered at 14. Had surgery at 14 and 18…then went on to deny them for years even though the surgeries were not a complete fix by any means. For some they are, but not me…went from there to working and living the best I could for 40+ years. When the shunt for Hydro failed once again in 2015, i tried really hard to hide even that…but eventually it was obvious and I had to tell my boss some back ground of the brain issues, but not what was going on with the shunt…none of her business.
Anyway, she was understanding and helpful, she was in over her head and was really in need of my knowledge of the job…so she kept my secret and made concessions… I still managed all the projects. (STRESS!!!) But she made sure that either she or someone else did the leg work.
When I went out finally for shunt revision she was heard to been kicking herself for not knowing her job better now that I was gone. She was very professional, so confidentiality was not a concern for me.
I would say, you know your boss, you be the judge…but in my opinion don’t tell HR.