Employer

I did not really find an appropriate forum for this question so please move it if you find a different forum more appropriate...

I was wondering how you guys dealed with your employers. I'm considering whether I should tell them about having CPNi. Obviously most people (including me) don't really like the idea of sharing health issues with the employer, particularly if it's about an infection. On the other side telling them might make them more understandable...

How did you deal with this issue?

I didn't tell my employer anything.  I never lost a day of work due to the protocol and I never wanted to be 'the disease' instead of my own self.  A couple of men at my job have MSi and they are always referred to as 'Jimmy with the MS', etc., much as a couple of my female coworkers were referred to as 'Sue, you know, with the breast cancer'.  I didn't want to be that person.  And, due to liability issues, my disease could have caused me to be put on disability, rather than be able to continue on as I wished.

Now, years later, I am fine.  I have told a couple of people I used to work with and they are always shocked I 'had' MS and was undergoing experimental therapy while going to work every day and supervising a few dozen people. 

I think you have to evaluate your circumstances.  I was fortunate; my insurance info was quite separate from my employment info, so my prescriptions and doctor visits were covered, but no one knew anything because all of that was administered by a company apart from my employer.  I was acutely aware, though, that I could not put the genie back in the bottle if I told people of my predicament, so I opted to keep my secret. 

I'm now considering dropping by the pot luck party they throw every year about now, to let people know about my situation and offer to help anyone who needs the protocol.  I can point to myself and tell them, "See, you can DO this, too!" 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Another part of this is that 70% of humans carry this bug, as I recall.  If your disabilities don't get in your way - or someone else who may depend on your ability to uphold your responsibilities - there is no reason for you to tell anyone.  MacKintosh is right about the label - later is soon enough.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Telling people about your illness does not necessarily lead to understanding. I've discovered this over the years particularly with my own family. I agree with the statement "I am not my disease". I worked for physicians and surgeons at my sickest and they knew I was very ill, but there was certainly no empathy or compassion there.

At the end of the day, you need to make your own decision and be aware of any negative factors that could arise.

 

Good luck

 

Cheers from Australia

CFSi 32years/FM 14 years/ CRPS 5 years/.  Previously MPi 5 years. Off everything since 01/12/2012.

 

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My manager and co-workers know about my MSi and I have explained it thoroughly enough for them to not question why "I look so well". I have faced significant discrimination by other students - but it never stopped me from working hard, it only made me look more reliable and sane than them.

I am fortunate to have a very understanding manager and supervising surgeons, who have put in over 2 years hours into training me to be the best I can in the field and support my treatment decisions. They've even offered me leeway with work hours, only because I was honest.

HOWEVER, I don't know the percentage of supportive managers. Need to be careful because it is relatively easy to have a tag as mentioned above "Jan with MS". Once it's there, it'll never go.

I don't work in a field that generates money on a turnover/production basis, so rest breaks are given every hour.. Maybe thats why they dont really care..? Please do assess your circumstances before tell them. remember, you cant "untell".

..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month

As I have ppmsi, my first symptom was limping. Then came falling and I broke my wrist (the one I teach studio art with); then came the utter exhaustion and a cane about the time I got the diagnosis. It was obvious that something was wrong and so I never hesitated in letting anyone know that I had MS. When I returned to work after a broken ankle I broke the tension of the first class by announcing that I had a broken ankle and MS. My students are wonderful and from day 1 of the semester they help by getting me a rolling chair and my supply bag; they help by arranging the showcase and some jump to do anything they think might be needed. Doors are always held for me. Packages carried. And when I've had trouble climbing up the handicapped ramp with my walker, students cheer me on: "JUST A  FEW MORE STEPS, PROFESSOR UNGAR! YOU'RE ALMOST THERE!" My students' evaluations of me remain very good and one student told me that "I am her hero."

Perhaps there is a downside; but this supervisor was a grinch before I became ill so I wouldn't know. Generally, I'd say that everyone has been wonderful.

I'm a New Yorker and a Sagitarrian; I couldn't even imagine the lies I would have to fabricate to explain my condition. I'm just not good at that sort of thing.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

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