Multiple Sclerosis (MS) Support Group

This is obviously going to be a very personal choice, and all I can do is add my own personal experience for consideration.

My history (brief version):
5 years ago a spell of not walking that I thought was an isolated incident as I wasn't diagnosed. Off work, so difficult to hide.
Jan this year I was diagnosed after some easily 'hidden' symptoms had me worried. I explained to my friends and family at that point that I had had this diagnosis, and that I would be doing everything possible to not let it affect me or my life (I play a lot of sport).
All was going fine until May this year when my right leg gave out. I still have issues now, although it comes and goes. I kept playing whenever I could manage it and stayed part of the squad when i couldn't. The girls were incredibly supportive.

The things I want to get across.
1. The way you tell people has a huge impact on how they react. If you are matter of fact, positive and 'unconcerned' about it, they will likely have the same reaction. If you tell them with a demeanour that tells them you think your own life will be ruined, they'll treat you as such. My friends tell me to take it easy, but If I turn up at training or a match, they accept that it's my decision to be there and to play as hard or as gently as I need to that day.

2. My work were amazing. I couldn't hide it from colleagues as my collapse was in the office and I spent weeks on a crutch or cane thereafter.

3. Not telling people would have driven me insane. Having to find excuses, not acknowledging that there was an issue, not being able to talk about how I was feeling.... I still have a big problem accepting that my energy levels and abilities have dropped. But the fact that people understand why I sometimes need to take a break means that I don't have to worry about doing so. I can look after me better.

You are the only person who can decide what is best for your situation. I can understand that working in the field you do would add a different dimension to the considerations that I haven't had to encounter. My biggest threat to my work was struggling to get around the office, so when it's really bad, I can either tell people to come to me, or on really bad days I work from home. Then I can come back stronger the next day.

Good luck to you and apologies for the lengthy response, but hope it gives you some food for thought. Ultimately although we're all in our own little boats, we're bobbing around in the same ocean.

Thank-you joblet for the food for thought. I know deep down that I should speak up (out) but this uncontrollable voice in my head keeps throwing all the negative scenario out of what will "probably" happen if I open up at my work. I really dont feel as though i can trust my employer to understand. Which is sad to think that way since i have been there for 21 years. I hate to be let go becuase they feel as though i am a "crutch". Takes too much out of me to think about it.
But, thank-you for sharing your experience from your work.

Claire,
I never got back full dexterity or strength in my left hand, but my need for that hand is much more limited than yours. I use tools such as a rubber finger tip (I need to flip through papers) and a device for loosening bottle caps. I don't know if devices exist that would help you, but it couldn't hurt to speak with an OT and/or a PT on both devices and hand exercises. I saw a PT for a short while and decided that I could make do with the devices that were available to me. Again, the amount of dexterity needed in your work is much greater than the amount I need in mine but I wanted to throw these ideas out there. Also, could this be an exacerbation (you mentioned that this is a recent problem)?

I was pretty much the same way as you. I kept my dx quiet for many years before I told anyone. A handful of people new ---still can't figure out why I think this is such a shameful disease---I didn't do anything to cause it. You being worried they will let you go because of your MS---is pretty much a lawsuit. My BF was fired because of her MS and she will get a substantial amount of money for years. Because of the discrimination. She was let go because her hands shook and her writing was effected by it. She was a teacher. Good luck and stay strong. Maybe it is an exacerbation like Joshie said---maybe call your doctor.

I have had two exacerbations and the last one was a year ago when I had to do three day intravenous steroid treatment. Since then I really feel as though my right hand is not the same. But not anywhere like it was during the exacerbation. I couldnt bend my fingers and very painful and numb. So for now the doctor says its not bad enough to go thru with the steroid treatment. I guess its just going to be this way for awhile. I live in Florida, which is a right to work state, Im told they can use any excuse to let someone go, and not use the excuss of ms. Lack of work is the #1 used, has been for years past at my employment.
I do the excersize/stretches for the hand and leg. It seems to go out on me more in the afternoon after I have been at work for 4 to 5 hrs.

In my experience trying to ignore or keep the changes a secret would have been so stressful. I currently teach Elementary PE. I worried as my mobility changed that others would see me as not being able to do my job. Sometimes I still worry, but I truly felt that I owed it to myself to be honest. Ask for help or changes in my class load. It has paid off. I have learned different ways of getting things done. I feel blessed that my employer is very supportive. I realize this could change. I have to be ready to face the changes that will support me and and their might come a time where I have to rethink my job of choice. That is hard because I love my work. I agree that this is a personal decision. What is right for me may not be right for you. But what we live with is real and sometimes doesn't go away. The stress of worry is unhealthy for you. I hope you find a way to make this situation work out. God bless.

Do I keep going and "sweat the small stuff" or do I need to come clean?
COME CLEAN. Sharing that you have MS is NOT the end of the world. If you have enough quarters paid into your Social Security, you will receive a nice SSDI check for life. If you have enough time on your job, things will work out for you. In the end, the truth will evidentually come out, so face the music now, instead of later.

MS is considered a disabling disease, so in my opinion I think you should reveal and be able to prove medically that you have an illness (you don't have to reveal any specific info on the illness) Once you officially advise them of your condition, they can't just fire you. You are protected and can take advantage of any and all of the benefits avail. to you. I worked for a good two yeas after my dx. I used to be a telephone man before MS. Find out if you can take a medical retirement. That's what I did. I just had 17 years with my company but the rule is you can get a medical retirement package with 15 or more years of service. as long as you can medically prove ur disability. Good luck, Claire

Thank you all so much for your advice. I feel more confident about by situation.
to Freddie-- on the note about early retirement, Im not ready for that action yet. Also the company I work for has no benifits, no short,long or early. I stayed with a company that unfortunatly does not have any kind of benifit. I cant get any on my own now becuase i disqualify with ms.
The reason I stayed so long? I love my job and I love what i do. Past 4 yrs-- new president --and lost alot of extras (benafits)and not a good time to move on. Also there is only three hearing aid manufactories here and one went under.

It sure sounds like you have a difficult decision to make.
You have been given some good advice here from others too.
I had no choice in telling my bosses as they knew there was something wrong as I had changed in so many ways.
With your situation it sounds like it may affect your job in the short/long term. I would contact the ms socisety or your local health area to look at getting a physio & ot to help you with ways to manage. There are probably tools/aids that would be able to help you, this may mean that you can avoid telling your boss for a while longer.
Take care of yourself & remember once you have told any one you cant untell them. When you do tell anyone, as one of the others said tell them in a positive way so that they get the impression that you are going to be able to continue as before but maybe with some changes.
Hugs