Can anyone suggest info for me to give my boss? - Interstitial Cystitis (ICN) Support Forum

Tinkerbell23 · 02-02-2010, 02:36 PM

Hi everyone!!! hope everyone is well!!! i am thinking that i have to tell my boss about my ic. recently i missed a lot of work due to my ic and she called me in the office and said i need to work on my attendance, that when i am out it messes up the flow of the office and she notices a "pattern" with me. (i am not sure what that means because i am never out on a fri or mon) i disclosed my ic to HR after i was hired and they said i did not have to tell my boss and to come to them if theres any issues where i feel she is violating my accomadations under the ADA. i have the time to use and i always provide a doctor's note when needed. she's not the most understanding person, but i think i have to say something. and i know if i go to HR first she will just get mad at me for "going over her head". i am frustrated because i stay late all the time and dont get paid for it and i never complain! anyway, what info should i give her? thanks for the help!!!

***ICNDonna*** · 02-02-2010, 03:49 PM

You might want to print some information from http://www.ic-network.com/whatisinterstitialcystitis/ --- it's pretty clear.

Donna

***dyno*** · 02-02-2010, 03:54 PM

I agree with Donna, that would be a great start.

***kadi*** · 02-02-2010, 04:10 PM

I've found that in my 6-1/2 years of working with IC that the least said is probably best. With my most recent bosses, I've given them a letter from my doctor that says I have a medical condition and reasonable accomodations for me to do my job include a classroom near a restroom and an end of the day preparation period. Beyond that, I've said I'll do my job to the best of my ability and I hope they can support me with the accomodations. In the beginning, I disclosed more & it cost me a promotion I wanted and resulted in bad treatment by an abusive assistant principal.
What I think bosses mainly want is someone who does their job well & doesn't cause inconvenience to others. Fortunately my coworkers help me when I need it, but I do worry sometimes that they're tired of it after six years, so I try to only ask when really really necessary...
Good luck! It's hard enough to have IC without people judging us unfairly for it...

Tinkerbell23 · 02-03-2010, 05:39 PM

thanks for the advice. i am going to bring a note from my dr. kadi, i do worry my boss will try and say ic causes me to be unable to do my job...so i think you are right, the less info the better...all i want really is not to get in trouble for being out sick...which i should add to my accomadations. as long as i have the time i should be able to use it and i always provide dr notes when needed.

123456 · 02-04-2010, 02:23 AM

If your company has FMLA, you could also apply for intermittant leave. That means your boss can't give you a hard time for missing work due to your condition. I did this as soon as I was diagnosed b/c of the major flares I was having. Now, I just use those hours for PT and maintainence. Your doctor will know how to fill out these forms, so check and see. I have also found that somehow being approved for FMLA validates your condition to your employer. They actually take me seriously now.

pennstate71 · 02-04-2010, 06:46 AM

I actually think the Dr's note is a really good idea. Between the differet treatments, appointments and PT - aside from days I just feel like crap, I felt I needed to tell my boss as well. He's male so I felt a little uncomfortable, but just gave him info on IC and PFD (including a lot of info on the pain and quality of life - such as the comparison to end stage renal failure, etc.) and in my case travel since I was getting pushed to do more of that which is so hard for me. He was really understanding and accomodating. I think it's different for each person in their position though - for me letting him know how much pain I'm usually in made him "get it" a lot more - for some I can see the hesitancy in their boss feeling like you won't be able complete your duties...so in any case - that was just my experience. I still feel like letting them know is the best route when it gets to that point so good luck

Zygala87 · 02-04-2010, 11:05 PM

I was a manager over ten different offices when I was in my forties and in good health. It was a stressful hard job and I loved it. I also cared very much for each and every person who worked for me. Each had their own problems from ill health to spousal abuse. The more information I knew about my co-workers the better I was able to help them. I was amazed that they could and would come to work after what many of them went through. Maybe things have changed today but in my time the more information and understanding I had the better I could be compassionate and accommodating for each one of them. I had a job to complete. When someone was absent often I really wanted to know why. I never had one person hired that didn't have some sort of hurt that they were dealing with. Myself included. If a boss does not understand that they should not be in a position of management. We are all human. Try to get your boss some information about IC. You maybe surprised in a positive manner I hope. Hug, Ziggy

mary124 · 02-05-2010, 08:09 AM

I have had IC (at least dx with it since 1992 (been working for the State of Texas since 1985). In all of the years I have had only 1 boss who really gave me a hard time about my being out of the office all the time (besides IC, I had heart problems where eventually had to having a valve replacment) and everything that goes with it. I finally had to get letters from all of my doctors and - that didn't help though till the Uro called here at work and explained more or less in detail what IC is and after that I never had an issue. This boss has since left, and other bosses have been here and gone but all has been great. The work flow doesn't get messed up due to the fact that I am the only one who does my work. As long as I have the time to use then everything here is fine.

michreev · 02-05-2010, 09:12 AM

I was diagnosed last year at the beginning of a new job at a new site as a teacher. I was very worried that my principal and co-workers wouldn't understand so at first I only met with my principal and shared what IC was and why I would need to leave to go to treatments. She was extremely understanding (I think the fact that a colleague was completing chemo treatments at the same time helped because they'd already dealt with a similar situation) and I soon realized my co-workers were also. Once I saw how truly caring they were I started to open up, and today they frequently check on how I'm doing, we celebrated the end of my Parson's treatments and they always make a point of including at least one IC-friendly dish in each of the staff potlucks. I realize not all work situations are so ideal, but I would say start with the basics and see what kind of reception you get. If it looks like your boss is understanding of your situation you might consider branching out to coworkers in case you need help to carry the load from time to time. (I also make a point, when I am feeling well, of offering to help them out when I know something's going on with them...they're sick etc. I always reference when they helped me so they know I recognize their contribution. "You always help me when I'm not feeling well. I know you are dealing with ____, can I help you?")

statesboro · 02-06-2010, 11:12 AM

I actually started my job back in 1995.(no urinary frequency)Ok. I was diagnosed in 1997. Anyhow, some people on the shift were aware Iwas peeing more often. I am a custodian with good bathroom accessibility to begin. We have to cover most of the campus; therefore, we go in different directions and different buildings.(different supervisors) Oh, yeah! I have been on medical leave because of my legs, but I may end up going back. They don't seem any better yet. I never went to the head custodian back then. Besides, that person worked during the day as opposed to me being on the 11:0-7:00 shift.(now6pm-2am) Ok. Several employeess do know I have to pee more often. Sme know why. Some don't know the real reason. Of course, I will not hesitate to tell the reason.(even though it really won't matter) Hey! I do get excellent evaluations sometimes. Ok. I was asked why I had been out 5 times in one year once. I actually got my primary doctor to give me something stating my medical conditions.(IC, CFS, IBS and allergy/sinus trouble)(what he put down) It was given to supervisor. Ok. I have not had any trouble since then. Of course, I had to leave early due to vertigo more than once. It was obvious I was really needingto.(feeling spaced out and wobbly)Oh! some have no idea that my bladder is messed up or that I am on medical leave. Oh, yeah! Some could care less why I have not been at work. Has anybody been contacting me? (not coworkers) I have been at work many times that I felt like I should have stayed home. Yep! Ok. I gotta let that be all now.