Not open for further replies.


Moderator emeritus
Sep 17, 2006
Learn about ALS
New England
Hello friends. Thank goodness for you all. I had 2 rotten things happened to me today and I am not a happy camper tonight!

First of all, I saw a local pulmonary doc this morning because the results of my Pulmonary function test picked up "mild" trouble expelling air. The Doc said that, IHP, this is the result of my general weakness spreading up to my chest and diaphragm. She has ordered tests to confirm her suspicion but I feel like I am very close to a DX I do not want to hear. And she is not even an ALS specialist connected with the clinic!

Then something happened at work that is making me re-think my plan to stay employed as long as possible. I got called on the carpet by my supervisor because:
  1. I have been spending more time at medical appointments than I do at work. (True, but I am using sick and vacation time to do so. I am not stealing time from my employer and I am not behind in any of my work.)
  2. I do not look sick. (Also true.) In fact, she pointed out, I have been seen lifting heavy objects like my printer when it needed to be moved, or climbing a small step stool to reach something off a shelf. How am I able to do these things if I am so ill? (I cannot answer this question, even for myself. Sometimes I can climb and sometimes not. Ditto for lifting a couple of pounds.)
The first issue is discouraging but we will just have to wait to see how it plays out. The second issue is something that I can deal with right now. I just cannot make up my mind what my options are or how to proceed. What do the rest of you think?

Feeling blue and mad as hell,
Cindy :sad:
Wow Cindy, you need a really big hug from someone quick! I feel your pain about work issues, I have missed a bunch of days to see doctors but my office is OK so far. And, I look 100% healthy and I feel really good right now, I just have this ALS-thing on my back. You are not alone!:|
Cindy - does your office not know about ADA laws? Wow. They are really asking for it. My husband is an atty (CA) and I used to work at the office. I know this is a lawsuit waiting to happen when they act like that. Maybe she would like to walk - or not - a few steps in your shoes. A former husband of mine was told by a Social Security Judge that his case was denied because he had a tan and didn't look sick. In fact his medications made his skin darker. I wanted to mail him the death certificate just to see how he would feel.

Hope you have a better evening.

LOL, I had thought about snapping back that she should be careful what she wishes for, since I am about 3 steps away from a DX that will, if I want, get me out of her hair for good, plus PROVE that I'm actually sick. But this is not about what she thinks. This is about me second-guessing my assumption that I would be wecome there in spite of any disabilities. If life is short, why take on a battle I don't need? I know a couple of grandbabies I could spend my time huging instead!

PS: thanks for the hug, Pdaddy. I need it tonight.
Last edited:
I just figured it out!

OK. So now light dawns...My supervisor was asking me why I was late for a meeting that I did not know I was expected to attend. I went to an event, in order to be supportive of my co-workers but was about 10 minutes late due to the doctor's appointment. Plus I was upset after the appointment and needed to compose myself.

She'd been told to ask me to come help set up, which made me both unsupportive and very late! But I did not know that, as she forgot to tell me. So when she asked why I was so late, I answered honestly, not all this background stuff. And she thought my answer was designed to garner sympathy.

But that does not explain her statements that I do not look or act ill. And I still do not know what to do about my inability to keep up. Maybe working full time is not really possible for me any more. And I still cannot figure out my own capabilities, never mind explain them.
What should you tell the employer?

I am new to this group, and I have only been dealing with the possibliity of having ALS for a couple of months, but I wonder what to tell the people at work. I have been going to doctors often recently, and it is not always possible to schedule the Dr visits around my work schedule.

I am concerned about my employer finding out that I might have a serious illness, when I could be many months or years away from an official diagnosis.

So far, nobody has asked what is up with the Dr appointments, but I expect that the question will be asked soon. I don't like the idea of lying or being evasive, but I am concerned that if the people at work find out that I may be getting sick in the future that they may want to get rid of me.

I know that there are protections such as the ADA, but I assume that these do not apply to people who have not yet been diagnosed.

So what is other peoples' experience with the workplace before diagnosis?

Husband Employer

We too were hesitant of letting his employer know what was going on. But after some people that he works for noticed his gait was swaying and balance off. I have to say they have been great for their understanding. My husband really wanted to continue to work. He wanted to get his 25 yrs. in . His boss fully understood and was working with him. Then he fell at work. Tripped over a rubber floor mat. He was using a cane at the time. After that HR stepped in and then we needed dr. written order of his limitations. After a couple of weeks of jumping through hoops to get HR approval, it got to be too much/stressful.
Since he's been on disability it has helped with the stress. He deeply misses the people that he worked with. Thank goodness for email. A group of guys are coming over to build a ramp for him. These people have been great. Mu husband worked as a Mechanical Engineer. works with his hands and was remodeling our home. now we are adding on to our home a master suite because all of our rooms are upstairs. I'm thankful that we are able to do this. This is giving us a chance to spend time together. I'm sorry to ramble. We are accepting his diagnosed,but still having trouble coping at times. I mean I really can't believe we're going through this. Thanks for listening. APC
Maybe there is really no best way to handle these sorts of things...I told everybody because I went through a bad patch where I was really weak and could only walk with great difficulty. So people were noticing and when my local Docs suspected ALS I was open about this. Then the clinic could not confirm the locals suspicions, so people began to think I was somehow cured. And I got used to the symptoms that stayed, even started thinking it was all a bad dream myself. I bet I announced two or three times on this board that I was about to consider myself cured. And I know I stopped talking about it both at home and at work.

So maybe I told everyone too soon? But I do not see how I could have worked the last 2 years, trying to cover up the fact that I am falling apart, although very slowly.

Based upon my experience today, I think my office is saying they want to know if they can depend upon me. We are a reactive, not a proactive place, so what they really want is someone who can step up when and if they decide to call upon you. Some days I can, some not. If I were going to ask for accommodations, it would be to know in advance what my schedule is so i could plan accordingly.

Maybe I just have to let them learn to deal with the new me.

Most companies that have 50 or more employees have certain disability rights if your company falls into that category than you have the right to use them. Your supervisor does not own the company she has no right to tell you that you do not look sick enough to take the time you need for dr's. . MLOA, FMLA and ADA are protected rights for disabled by the Federal Government. You have every right to use them. Don't let anyone intimidate you. I just got back to work after 3 months of leave. After my FMLA expired I had to fill out the ADA paperwork and I did. But for me I needed to go back to work because I could not afford not to. But in any even,t I could have filed the ADA and received work accommodation's. The only ones who have a right to know about your disability is HR. they are the only one's required to know what is going on with you. Talk to your dr about the possibility of modifying your work so that you are not lifting heavy objects at work. And as far as your drs appts make them far enough in advance and take the day off get a note for the entire day if you need it, it's totally legal. Each day counts as one absence but if you take two together it still counts as one as long as they as consecutive. I hope this all made some sense?
Anyway, all this being said, stand your ground ....seasoned with grace! You have rights.
I know I am lucky to have a lot of protections. I live in a state that prides itself on tolerance and I also have a strong Union. Plus if I get a DX I will be able to go out on disability with full salary, and if they annoy me any more I probably will do that. Fighting the issue takes energy, and I can think of better uses for what little energy I have.

Plus I'd have to change corporate culture. I do schedule my appointments and make my announcements of them far in advance. But they don't plan ahead, thus are not able to make use of this information and get frustrated at the person who is not around.

We've been working together since we were all young chicks and dudes. There's your clue: they are not adjusting to our aging workforce, never mind the first one to have real issues. And it is easier to cross the line when you feel that comfortable with one another.

It is not easy to think about, but maybe it is time for us to part.
Is it your union that would allow you to go out with full pay? I need to get some of that insurance.
Gotta love those sups

Hi Cindy, Im new to this forum and am not very computer savvy. I read about your experience regarding how your supervisor is reacting to your situation and this does not surprise me. I had a supervisor (stress on the had), who was dealing with my situation in a similar fashion. I am sure you have thought of discussing the situation with your Human Resources Department, but if you have'nt already, it may be a possible solution. I was diagnosed with ALS at the age of 30, and fought to keep my job for the next 7 years. We all ended up losing our jobs when the company was acquired by another and the facility was closed.
My point is this... It's your job. You earned it and kept it and all promotions and raises. Don't let someone discourage you from succeeding.

In short, HANG TOUGH.

Speaking of bad supervisors....yesterday while I was at work, it was slammed. I think I am like you Cindy, I force myself to do a good job and maybe I do not look sick to others. Well, I had been working the "front" we have 39 ER rooms, the front is where all the codes and high acutiy patients come in. Antway, it can be very busy. I was begining to feel very tired and there was a trainee who was in the back section. When I asked my charge nurse if I could take a break I am allowed 2 per shift by law, she said, in front of everyone, I have not had a break or even a lunch , sometimes we just do not get a break. Well, I was floored. Most of the time I am there I do not get my breaks, and sometimes even lunches. I just couldn't believe she said this in front of people. I did not say anything to her I think she is very unprofessional. Thanks for letting me share. Today's a new day. :mrgreen:
the exact same thing happened to me. i tried to go back to work 3times in the first
4-5mths but i was so ill and could barely manage a week before being bedridden.
my manager told me that the area manager wanted me to resign and to put it in writing but i refused, i loved my job and thought somehow i would be able to go back. that was in the oct,by april the following year the company was taken over and alot got made redundant including myself. i think they new what was going to happen and did not want to pay me redundancy money. i am glad i did not write out a resignation.
with regards to giving up work,its all about the quality of your life outside of work.
if work is leaving you in a mess at the end of the day it is time to give up and spend your time on more important things. i stopped work early on but it was for the best.
my progression has been slow and i think alot of it is down to no stress and a quiet easy going life. i am sure if i carried on working and pushing myself i would have gone down hill faster. by the way i too usually look healthy in the face and told this ofton(dont look my 40yrs) but from the neck down my body is "buggered" as we britts say, but i guess you can't have it all lol
take care
Cindy, I think that even right now, without a complete diagnosis that you would qualify for the Family Medical Leave Act. It is something you might want to actively pursue, as it prevents employers from any discipline attached to absence from work. The industry that I work in (airline) is most likely the strictest in the country as far as absence goes and the FMLA has been a godsend for me. (as a flight attendant I am only allowed 3 absences per 12 month period without possible steps of discipline attached). I think that any employer with over a certain number of employees (50?) is required at this time to abide by the FMLA. This is not disability, I can come and go as needed. One is paid through their regular sick time until that is exhausted, and then after that either choose unpaid absence (what I chose) or to then use disability.
Not open for further replies.