What are your suggestions for dealing with Chiari symptoms at work and school? It seems like once a teacher/boss learns about this you get written off as a liability who will always be sick, or at least that is how I have felt. I find myself telling others that I'm having a "migraine" instead of chiari headache (etc, etc) and it is horribly frustrating.
Any suggestions from your experiences?
Donna
I can't say that I really have any suggestions for you. But here is what works for me. There are only 2 people that I work with that know what I have. I think others have picked up on little things and know that there is something big going on with me, but they haven't pushed me to tell them. I had to give a briefing the other day and one of the girls who works for me asked me if it was a "good speaking day." So they've caught on a little. It actually made me chuckle. I said I hope so! For me, I know I'm worse later in the day, so I try to do as much as I can in the mornings so I don't get behind on my workload, and can work a little slower in the afternoon. I think my boss was afraid that I would always be sick, but I haven't called off once yet. I'm reserving that for the days I can't get out of bed. One thing I have realized is how important a good nights sleep is. If I don't get enough sleep the headaches and mind function is so much worse. I just started back to school this semester and I can't say its been easy, but I have to work a little harder now. No one at school knows anything. I just try to read and do as much as possible on the good days, and take my time on my writing assignments. Spell check is my best friend!
Ok, I do have a suggestion...about a month ago I started taking a natural supplement called Butterbur. Its supposed to help with migraine type headaches. My headaches have been way down since. I also started to take Ginger root supplements to keep my nausea under control. It really seems to help me. Overall, keeping those 2 under control has seemed to make all of my symptoms a little better.
Your school and work should have departments that specifically deal with disabilities. You don't have to disclose anything to your coworkers or classmates that you don't want them to know. If they ask, just smile and say, "I don't feel comfortable discussing that right now. How did you do on the last test?" If they start prying, excuse yourself and walk away.
I was in school and working, dealing with moderate symptoms of what we thought was fibromyalgia, and I don't think you have to personally notify your teachers or your bosses. Tell HR/the disability department at school and they will notify those people that you have a disability and that's that. If your boss or teachers treat you any differently than any other student, notify HR or disability department immediately. Start a record of what's being said or how you're being treated. I was treated awfully by my boss before my symptoms exploded and I was told I couldn't work or drive anymore. I spent more time arguing with HR than doing my job! Best advice would be to keep a record of EVERYTHING if you feel you're being treated unfairly. Other than that - people can be awful. You don't owe them an explanation. Just take care of yourself.
Good luck!
Katrina W.
I feel the same way some days. I had already filed for intermittent FMLA for my migraines just as CYA type of thing. My bosses and work have been very understanding for those but I wanted it as a just in case type of thing. I did not go to work yesterday. My entire body hurt and my head felt like it weighed 50 pounds. I have told my bosses and my direct co-worker what is going on and although they have been supportive and we are short handed since someone got let go (small dept. only 4 of us) so one person down makes a HUGE impact on everyone and I feel extremely guilty when I miss work. I love my job and the people. But for the last few weeks, I feel like I am being left out on major meetings that effect my job too. It is almost like they are going ahead and planning or working like I am not here. They know I go next week to Mayfield and they know surgery is a possibility. But the also know I am a very dedicated worker and I wouldn't leave them high and dry. Not saying I would not have surgery because of work, but if I have a say in it, I will choose the best time for my family first, and then work.
Other then work, only my family and a few friends know. I have said anything on facebook or twitter. Not sure if it is more that I want to avoid the pity party, or maybe the questions, or the questions that would lead to guilt since everyone knows about sons medical issues. But it is what it is, and I am doing my best. I would hate to lose my job or not be able to come back to work. At the same time, I would hate to live like this the rest of my life too.
I made it to work today, barely. It was hard to get out of bed and will be harder getting caught up from yesterday and a 3 hour meeting... but I am sure I will manage.
I think it is harder having something that isn't "visible" to people. They look at you and don't see anything wrong, and even if they did know, they wouldn't understand. My boss did google it and we have talked, which I was surprised he took such an interest in it and has been very supportive.
Donna you are in Indy right? When do you go back to Mayfield? I was thinking it was some time this month. I see Dr. Tew on wednesday!
Hi, I'm pretty new here but want to jump in.
I had a sit down with my boss a couple of weeks ago to explain my situation to him as symptoms have been getting worse. Among them are nearly blacking out when I stand up so I want him to know just in case I do go down at work. I also sent him a list of Chiari symptoms that might affect my physical or mental state at work. I asked that he have HR put it in my file as well.
I'm lucky that I have a great boss who is receptive and non-judgemental. I also don't sit far from him or the HR people so I figure I'm killing two birds with one stone - one of the three of them will know what's going on!
So far I haven't had to take off work but I feel good that he'll know what's up. Knowing him, he's done additional research to educate himself which is great.