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Posted by: Alycat742 ® 11/17/2011, 20:06:40 |
The symptoms of cervical dystonia and now blepharospasm are progressing to the point where it is difficult for me to work. I've always worked and I'm single (42). It was all I could do to keep my left eye open today at work.. I just don't know if I should inform my employer of my situation or if this could be a huge problem in my career and basically retaining employment. Is anyone working with this condition? If so, did you inform your employer? Many thanks..
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Posted by: pdb ® 11/17/2011, 22:31:37 |
Can we assume you are in the US? If so, the Americans with disabilities act gives some protection. You will need your doctor to confirm your condition, and your employer is required to make some form of accommodation for you to allow you to continue working. If the condition is too severe for work, then applying for disability is the thing to do. What you don't want to do is to get fired for failing to do your job. If they know you can't do it because of a disability, they have to take that into account. If they don't know you have it, they can fire you for non-performance. You also need to take into account your docto's recommendation about getting Botox shots. If you refuse, your employer may have grounds for rejecting disability. I'm not a disability lawyer, so you need to take all these words with a pinch of salt, but think it through with these sorts of issues in mind. peter |
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Posted by: Alycat742 ® 11/18/2011, 09:14:42 |
Thank you Peter. All excellent points. I appreciate your feedback! |
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Posted by: Lynn Yarbrough ® 11/18/2011, 15:59:32 |
I recall fairly well my situation shortly after my first correct diagosis of BEB. I had very recently accepted a position as Sales Support Engineer for a prominent computer company, and also started Botox treatments after 20+ years of misdiagnosis. Among my first assignments was a stand-up presentation of some of our products; needless to say, I guess, but I blinked big time. One of our customers noticed it and asked what was going on. I explained as well as I could, including my then-current plans for Botox injections. The customers accepted my explanation and we continued our conversations. No problem; I faced up to my limitations and prepared for the worst, and the customer said no more about it. The main thing that I did right, I think, was to prepare myself by doing a dry run with my boss. He was pleased by my openness and cool head, and we worked well together both then and later. There is, I believe, no gain in hiding the truth, no matter what it is: it will eventually rise to the surface and affect whatever you are trying to do. I believe it's best to meet it head-on. Good luck, --- Lynn Modified by Lynn Yarbrough at Fri, Nov 18, 2011, 16:01:15 |
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Posted by: Alycat742 ® 11/18/2011, 20:38:07 |
Thank you Lynn. It's heartening to hear of a positive outcome from disclosing the "truth". I appreciate your response~ |
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Posted by: Jaye Denman ® 12/05/2011, 12:41:56 |
Lynn...You were so right. During my career post-BEB, I also had to give presentations to various size groups. At the time I was also doing interviews on-camera, which I had to stop because the blinking was too prevalent. I was upset about losing that opportunity, but pleased that I could continue other aspects of my career with only minor problems. I learned a lot of little "tricks" that helped me mask the problem to my audiences (and I found that one-on-one talks were even more of a problem since my eyes stopped "bleph-ing" while I was talking, but started again big-time when I hushed, listened and looked at the talker). The best thing I did, however, was to prepare my boss before these things became apparent and gain his support. BEB is something that can't be hidden. Over the years, I think I've educated a lot of people about the disorder, and most have been empathetic and supportive. |
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Posted by: Moderator-JB ® 11/20/2011, 00:06:05 |
Alyson, I did not inform my manager immediately fearing that I would lose my job. Later it became unmistakedly obvious. It proved to be best to have described it. The company is then put on notice that you have a disibility qualified disorder.
Many companies are not able to give you a low lighted office for yourself. I became a liability to the company. At one point I turned quickly and walked over an office leather chair, in the midst of everyone. I did work for a bit over one year after my correct Dx., wearing dark sunglasses while in the office, however, I doubt that I would reccommend it to anyone. Driving to and from work put myself and others at risk. Notification helped me in my fight for Long Term Disability and later permanent disability. So hang in there folks, you can do whatever you need to. Judy Related link: http://www.socialsecurity.gov/disability/professionals/bluebook/2.00-SpecialSensesandSpeech-Adult.htm Modified by Moderator-JB at Sun, Nov 20, 2011, 00:11:16 |
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Posted by: lastradioman ® 11/20/2011, 13:30:59 |
Alyson and Group,
My own story is this: I'm considering (at this very late stage in the career game) what benefits or options there are in making my disability "official" (Live in California). My blep started manifesting around February; going from an irritating blinky-eye-thing to eyes closing and the accompanying slowness and jerkiness, anxieties and so forth... blep trouble with computers, TV, driving and socializing. In May, learned my job in public safety would be over as of July. The mandatory retirement did not help the blep. I'm working as a retiree for the same public safety agency until the end of the year, and thinking of how being officially disabled would help me with future work. One thought is, at least I'd be going in to a new job situation without omitting or concealing my blep, so accomodations would have to be made (per law). I'm also going through another freakout, this one being my self-worth because of by blep.. I've been in public safety 25 yearss. Public safety and military often have self-sufficient mindsets and what's troublesome to me is the potential loss of vision, and loss of abilities - not being able to drive or perform other taska. My ravings seem to have slid off-topic, but I think I will find out about what I should be doing as a working retiree, who may want to continue working, and how that all relates to disability. Thanks |
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Posted by: MT ® 11/20/2011, 13:41:57 |
Alyson I'm sorry to hear of your situation. Whether or not to tell your employer is a difficult decision, but I firml;y believe that honesty is the best policy. I have been very lucky in my journey through this awful condition in that after I was diagnosed and started describing my symptoms to my boss, he asked me if I had BEB. I was shocked! Turns out his mother-in-law also had this, so he knew exactly what was going on and had a good handle on my fluctuating limitations. "Coming clean" was the best thing for me and my company will provide me with alternative formats for hard copy info (such as audio books instead of books) and my employees are attuned to when I am having trouble and will read for me if needed. I am very open about BEB and view it as an opportunity to educate and advocate. When I meet with vendors, customers and government regulators I tell them what is going on so they are not put off by my inability to maintain eye contact at times. Since I am rather shy, it serves as an ice breaker of sorts and makes things more "real". In short, I have found a way to make it work for me rather than against me. That said, it all depends on what your job is. The ADA is a wonderful thing, but there is that sticky definition of "reasonable accomodation". If they cannot reasonably accomodate, that serves as support to a disability claim. I wish you the best. Michelle |
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Posted by: Jaye Denman ® 12/05/2011, 12:34:32 |
Shortly before I was diagnosed with bilateral BEB nearly 20 years ago, I ran into a hallway wall at work when my eyes squeezed shut. I was fortunate in having a a boss who was very understanding and supportive (even though he'd never heard of the disorder before). I certainly don't think anyone can live with the physical manifestations of BEB and keep it a secret at work. It's better, in my opinion, to schedule a conversation with one's supervisor and explain what is going on, as well as treatments that will help one to function. Besides, an employee suffering from BEB may come under the protection of labor laws for disabilities (and make no mistake--BEB can be a disability, even with treatment). At least, that's possible in the USA. You should check into that, perhaps with your company's Human Resources manager. |
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Posted by: UCF Knights Student ® 12/05/2011, 13:29:57 |
I would sincerely agree with everyone's opinion that you should tell your employer. Americans with Disabilities came up; however, that's a big case to prove - and costly as well. Given the nature of most employment in the US - being right-to-work - the case becomes that much harder to prove. That said, you don't want to really work with an employer who isn't willing to compromise. It's not a large issue and I have never come across anyone who cared. I do public speaking at high schools because of my speckled academic past, but success later on and one of the most common questions I get asked is why do I blink. I then turn that into another positive story about how obstacles are only as big as you make them. Neither here nor there, I'm just reiterating that others having knowledge isn't a problem. As another poster stated though, once you become a liability to the company then it may be worth considering disability payments. Then, your notice to the company can only serve to benefit your long and hard road of obtaining those payments. Best of luck regardless though! |
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Posted by: deb in Peterborough ® 12/06/2011, 08:53:33 |
I did share with my employer my diagnosis and accommodations were made for me. However, after a couple months, when apraxia set in, it was evident that I just could not function in the job. I went on short term, then long term disability through my employers plan and was off for over 18 months. During that time, I had a limited myectomy and did the trial and error thing with the botox to get the optimal amount and location to function.
I returned to work in November, but while I was away, there had been a restructuring and my position was made redundant. I was asked to attend a meeting and was able to give input about my function ability. As a result, I have a job that is tailor made for me, am able to work from a home office, with minimal driving. I also have a flexible work schedule, so as long as I get my hours in, it doesn't matter when the work is done. Sorry for the long post, but just to let you know that some employers can work very hard to assist your back to work plan and help you function. |
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