What to tell employers?

[westjlittle]

I believe that it is a mistake to keep your illness a secret. There are protections in place for people with disabilities. There is a huge difference between an employer's response to an employee who they perceive "won't" lift a box and an employee who they know "can't" lift a box.

I believe that if the guy who worked for a retailer had brought up his condition sooner; a better job may have come up in the meantime.

Now I certianly have worked places where I wouldn't trust the HR people as far as I could throw them. However, my current employer has been supportive. They put in a ramp to the office and an automatic opener. They have supported ALS fundraising.

Just recently let me stop taking phone support calls from customers. It was no big deal for them since I told them 1.5 years ago. We all know that at some point I would not be able to work with customers anymore. That has happened over the last two months. Basically, no one understands me on the phone anymore.

Jim

 

[PDaddy]

Very good point! I am not really "hiding" my DX from my employers, I just want to be sure I say the right things to them at the right time. Right now I am waiting for my doctor to write a open letter to my employer stating I have ALS and I am still about 100% productive in my work. This week may be 'the week' I inform them. I reeeely need this job, and it's insurance is saving the day for me right now.

One thing I am somewhat worried about is silly. I don't want everyone I know to come up me and ask "are you OK?", "how do you feel today?", "what do you kids think about this?".... Over, and over again.....

 

[westjlittle]

I think you may be surprised by how people respond. In my case, I found out who my friends really were and weren't.

Very few people will want to dig into the details. If you bring it up; they will discuss it.

Some people avoid it like the plague. Literally. I had several friends who really stopped calling because they couldn't deal with the terminal aspect of the disease. They are visibly uncomfortable when I am in their presence.

Thankfully, your real friends will appear and do things that you never expect. I hope you have the same experience.

Jim

 

[PDaddy]

After reading about the ADA and going through the company handbook, I "manned-up" and spoke with my management last Friday. The medicine I am taking for my emotional liability works pretty good but it let me down during my meeting(s) so my face tightened up and I couldn't talk too well. Anyway, they were very receptive and will be accommodating to my work at home a few days per week request. I also met with the head of HR who was also very nice about it. She knew nothing about ALS, not too surprising really, and asked what I needed and asked what should they do if I fall over. She needs to do some ALS research. I should find out today how my request has been granted. :-?

 

[Rob Kerr]

Something people who are in this situation with employers need to also know, that even if an employer accomodates you for disability and puts you into a new possition, they can legally pay you the prevailing wage. In my case this was substantially lower going from manager to a paperwork clerk. I kept it to myself as long as possible to get my financial affairs in order. We payed down debt and my wife got a higher paying job. I worked in an industry that was 90% manual labor and had I come forward sooner may have put me into something differant before i was ready, i looked out for my family first.


I hope everything goes well for you pat..............Rob

 

[hopingforcure]

Jim first of all wanted to give you a high five on the MDA stories. What an honor to be chosen, and what a well deserving choice in you.. P- I am glad things went well with work, sometimes it is amazing what little people know about ALS.. I guess I am the kind of person in life who prides herself on knowing a little bit about everything, which of course is dangerous according to my husband. But I just get amazed at people being oblivious to this disease. Everyone we inform is a possible step closer to diagnosed.
I am like you, sometimes just hate to answer the questions, it gets hard. Someone on the board gave good advice and said people will for the most part follow your lead on how you act, how they will. I find this most with children, if I seem strong, they seem strong. I feel like this is the strongest group of people around... H4C.. My name from P...

 

[PDaddy]

Update

I finally got word from management about working from home (albeit verbal only). The deal is, I can work at home on a 'as needed basis' and "safety first". All I need to do is call or email my boss and I get the VPN goin' and I'm good to go! I received a nice formal letter from my Neuro and gave that to HR today too. It said that I should work from home blah blah blah.

 

[PDaddy]

Nother Update

This is a great company to work for. I received a memo from HR permitting me to work from home when I feel like it and (but) they want to review the policy monthly. I can live with this.