I've been combing over the older threads. I know the topic of work and Chiari has been discussed in various ways on this board, but it seems like most of the conversation is related to long term disability and such. I'm hoping to keep my job, and if things stay the way they are with my Chiari & SM maybe that will be the case.
Anyhoo, for those who are still working full time, are you open about your medical conditions? Do your coworkers and boss know about your Chiari and other condition(s) - if you have any? I've been in my current job for a little over a year. I started experiencing symptoms shortly after I started the job but I wasn't formally dx until this summer. I am beyond blessed to have a job that allows me the flexibility to work from home a few days most weeks, but there are stretches of time where I have to be in the office all week, and one project had me working 10-12 hour days for several weeks. Thankfully, that's more of the exception than the norm. I also have wonderful insurance through this job. With the flexibility I didn't have to take much leave for my appointments.
I've been able to mask most of my symptoms from my boss and coworkers so far. But some days are just so bad I can barely make it. I'm debating approaching my boss about my situation, and mulling over how much I actually want to share. I'm hesitant because 2 coworkers in my dept are currently on medical leave and observing the office politics it seems that people are "supportive" - in the shallow, narcissistic "supporting them makes me look good" way but kind of shady in some aspects like trying to go for that person's job on the sly, talking bad about them while they're on medical leave, acting as though they're dead weight to the team.
My employer's been noted to be open/supportive of those with chronic illnesses/disabilities, earning a few nationally recognized awards from different organizations. But now, I'm thinking maybe t hat's with just the corporate headquarters and not really the case in all the other offices because it seems that the office I'm in has a culture that's only supportive on the surface (when it makes them look good).
But I'm worried that some symptoms will slip and show to my coworkers and I'll be forced to come out with what I'm going through. Or at least provide a modified explanation.
Did you mention your medical condition to your boss/colleagues? How did it go? Were they supportive? Were they accommodating?
Side note: I work in an office, so no heavy lifting. A lot of sitting down, desk work. But it can get to be high-stress at times.
another note: I'm single, no kids, but no nearby family either. It's pretty much sink or swim for me. Another reason why I'm trying to hold on to this job.
That's a tough situation to be in. Is there any way you might be able to speak to your boss privately, and let him know? He may be willing to keep the information between himself and you. What kind of symptoms are you worried about slipping in the work place, if I may ask?
Si, I work full time and always have with exception of 2.5 months of fmla to recover from surgery. I had always been open about my headache issues because on a few occasions I had to ask for my schedule to be switched around when I was trying different treatments. When I found out I had Chiari I told them because I was hoping that surgery would be in my future and didn’t want to surprise them.
Think it would be wise to tell your boss about it privately, and only tell coworkers on a need to know basis- people can be very caddy in group situations and even mean. Just the way it goes.
I was glad my superiors knew because they have actually been a support and very encouraging. I have also taken every appropriate opportunity to remind them how much I appreciate my job and how important it is to me.
If you qualify for FMLA request the forms from your Dr and take it to your employer. They legally are obligated to allow time off as the Dr. says is needed.
I talked to my employer first (my direct supervisor) and co-workers explaining the condition and they seemed concerned. Then I spoke to the department head... Who gave me the forms for FMLA so they only do what is legally obligated. I had c-spine surgery 6 weeks ago and am awaiting xray results to see if I can go back to work (don't feel ready yet). My boss called me 2 days after my expected 4 week leave telling me I should get my primary care provider to release me for work!
My point here is... be open and honest... get your FMLA and you'll have legal recourse if necessary. As with all the BS that comes with Chiari... hope for the best and prepare for the worst.
Thank you everyone for your responses. I just wanted to hear (or rather, in this case, read) others experience with this as I am mulling everything over. How to approach my boss, how to explain it with just enough information, etc. I know every situation is different, but it helps (at least, for me) to read other personal stories on how others navigate through similar experiences.
I'm not getting the surgery just yet - I'm relatively newly dx and am in the process of learning all of this. I haven't been bad off enough to use my short term disability yet. And for dr's appts since there's a bit of flexibility in the work schedule I've just been working around the appointments when I can.
joker12090 one day I was feeling so run down from a high stress day that I just needed a break and ended up putting my head down on my desk just for a few beats and someone else took note and "joked" how I was sleeping on the job. I'm also hypoglycemic and I've learned the hard way that if my blood sugar is low it kicks my other symptoms up a few notches. Now I keep snacks (nuts, fruit, etc) with me at all times. it's a small thing, but it seems to help.
Hi Sy! It's a tricky situation. The line of work that I'm in I had to tell my boss. Which wasn't an issue for me. He has been more than understanding and supportive. I think I've only called off four times this year. So he knows when I do, its a really bad day. We've had to make some adjustments with my work, because I do (did) occasionally have to lift heavy things and operate forklifts and other machinery. He makes sure I have help when I have to move or do something, and we decided because of some of my symptoms that I no longer operate machinery. But we decided that locally, and no one knows why I don't. I did tell two of my coworkers. But that is it. And I did that for my own safety primarily. What if something happened while I was at work and my boss wasn't around? They would have no clue to tell the EMT's or doctor's anything that could help me. And, until we had my meds under control I was a mess, so they noticed and asked me. Because they cared. I do have a few coworkers however that would be just out to get my job. So it's definitely not public knowledge. And I have your same note...I'm single with no kids, and my family is two hours away. So a girl's gotta do what a girl's gotta do. My mom actually wants me to get a life alert!!! I have some balance issues and have fallen a couple times. She's worried that something will happen and I'll be laying there for days. I get her point. But I'm only 38. I'm not getting a life alert....yet anyway!
I had already filed for "Intermittent FMLA" for migraines before I found out about Chiari. I am really close to my bosses and work for a very supportive company but I filed for FMLA because I miss at least one full day every other week for migraines. Then had surgery and used 10 weeks for that, I am now out of FMLA for a few more months and it sucks but they are still supportive and they know when I say I need to leave, I really need to leave. I hope your work is supportive. :)
i have not seen ne one mention cognitive issues....My employer had been aware, over the past 2-3 years, that I was having pain and dizziness issues. They allowed me to work from home 2 days a week. But I began having seriously increasing brain fog, disequalibrium and cognitive (off and on) issues. Since I work with $$/Funding, I felt I MUST speak up.
After making some errors, I scheduled a 1x1 with my boss, and seperately, an HR person.This was about 6 mo ago, and I am 4 weeks post-op, PFD, partial laminectomy, and duraplasty.
Today was uppose to be my first day back, but my NS moved to Jan 6 at my 3 week fu. While I have had many physical symptoms dissappear/Improve, and am doing PT, I feel same/worse cognitively.
Not sure what to do about this?? I know I can no longer perform as I did 1 year ago. Has ne one had their NS perform cognitive tests?
Sleepy, I think if is still very early in terms of recovery- at 4 weeks post op I was not doing well cognitively either. I was supposed to go back to work at the 4 weeks too, but postponed it for an additional 3 weeks. My cognition improved week by week. Now at 9 months post op my cognition is better than before surgery.
Jenn
sleepy said:
i have not seen ne one mention cognitive issues....My employer had been aware, over the past 2-3 years, that I was having pain and dizziness issues. They allowed me to work from home 2 days a week. But I began having seriously increasing brain fog, disequalibrium and cognitive (off and on) issues. Since I work with $$/Funding, I felt I MUST speak up.
After making some errors, I scheduled a 1x1 with my boss, and seperately, an HR person.This was about 6 mo ago, and I am 4 weeks post-op, PFD, partial laminectomy, and duraplasty.
Today was uppose to be my first day back, but my NS moved to Jan 6 at my 3 week fu. While I have had many physical symptoms dissappear/Improve, and am doing PT, I feel same/worse cognitively.
Not sure what to do about this?? I know I can no longer perform as I did 1 year ago. Has ne one had their NS perform cognitive tests?