Wednesday, March 07, 2007

Do you tell people you have MS?

I haven't posted in a about a month. Things have been really busy with work and I've been enjoying the job tremendously.
Of course, being busy has it's draw-backs with my husband, so lots of stress there. Then the lack of sleep - some of which is self induced (my choice).
And then I got Strep Throat AGAIN this past weekend. The morning I started feeling the sore throat, I started having "paraesthesia" going through my left heel. Never knew what it was called before this week - I was describing it as a rushing feeling, like I can feel my blood zooming through my heel - every "two Mississippi's." But found out when describe as electric shock - much like L'Hermite's sign - man - that nails it as far as a description goes.

Today I shared the fact that I have MS with two co-workers. I had a strange reaction to that from some others. Only three people at my new job had known before. I don't know why - I brought it up because one of the co-workers was saying they were having stress related health issues and I just tried to say that I knew how hard it was to still stay stress free - even despite doctors orders because of my experiences with MS. I probably shouldn't have said anything.

Sometimes I don't know - do I say anything? Other times I think - well I live this mother f'ing disease every f'ing day - why can't I talk about it? Other times I'm embarrassed by it.
I really hate it. I wish to God that it didn't have to be so hard sometimes.

I'm in the best job I've ever been in with these great fabulous opportunities in front of me. I love what I do so much. I have the best boss I've ever had and a wonderful friend who means the world to me. I was meant to be where I am right now.
I have two small children who need me - a husband who's pissed I work so much and then when I'm home, I'm working, and when I'm done working I'm exhausted... ok - not a strong point.
But that's MS!! I want to be able to have it all and then I have this.

I want to be able to talk about it - but then there is some weird - I don't know - hang up about it.
Of course then there is sharing that I have this disease and having people look at me like, "What the heck is she saying, she looks fine." Then I feel sorry for myself. Then I just want to f'ing scream.

You know - things will be fine - go along just fine and I don't talk about it - then I have symptoms that wig me out - like the leg thing and also my eyes. Very blurry vision lately - but the good thing about that is wearing my "reading" glasses helps. But every time I get a "flare up" it smacks me in the f'ing face again!!?!?!?

Am I not supposed to talk about it? Am I supposed to not tell people? Am I supposed to pretend it doesn't exist especially when I'm worried the blurred vision is from it, or when my legs freaking out from it, or my hands go numb from it. ARGH!!!!!!!! It's bad enough to have the f'ing thing then to have to f'ing worry about who f'ing knows!!!!!!!
Jiminy Christmas!!!

Ok - I've vented. Please - anyone, anyone? Do you tell people? If so, what's the reaction you get? Pity? GOD - I don't want that above anything!! If anything I want people to see how much I fight instead... but then I'm a bawling baby right now - so that's kind of weak and wimpy of me.

Sorry for the big beeeaatch session and the cussing. Please share your experiences. I'm very curious how the whole "reveal" affects you all.

Hope you're all well. Please take care.


Stephen said...

i told my supervisors at work, just so they wouldn't think i was drunk when they saw me stumbling down the hall. i treat it just like any other part of my life - like i wear glasses, i use a cpap machine, etc. i don't use it as an excuse (at least i try not to), and if people freak out, i'm happy to help educate them if they want, or they can deal with it anyway they want. i don't announce it, but i don't keep it a secret.
but be careful, different employers might look at it in different ways, and might not be a accomodating. it's important to have at least one or two people who understand how hard you work every day, and who also understand that there are days you just need to bawl.

great question, thanks for raising it!

mdmhvonpa said...

Yeah, the revealing of our medical status is always one of the eternal questions. You really cannot gauge how it will pan out .

CC said...

After reading about the ups and downs about telling or not telling, I decided to tell everyone almost right after my diagnosis and have been open about it ever since. It is so much easier!

Beth said...

Yes. When I'm comfortable with people, I tell them. From my diagnosis onward, I've decided that i want people to know about it from me. I don't want them to hear in a round about way. Also, I don't want to be walking on eggshells around people.

I don't know, when I went back to school (I was partway through my Bachelor of Education when I got sick last year), the people who made it the hardest were the people who didn't even acknowledge that I was sick, I was in the hospital, and I had MS, even though they knew.

If I'm comfortable talkin about it, it seems to make it easier.



Julie Everett said...

Most people at my work know there is something wrong with me, but it is still difficult to deal with the looks on days that I walk funny, or on the days when my words get jummbled.

It is easier to just tell them sometimes, but you also kinda lable yourself as an outcast, or so it feels like you do.

Most people don't understand it. I still don't understand it all.

Cyber hugs to you! Vent all you need!

Jammy said...

I would tell. I would prob. be paranoid that people were wondering why I was walking funny, or thought I was drinking or something.....LOL so I would bring it up if I had some symptom showing at the time.

Plus, with all the dr. visits I've had lately, most recently, the ER I think I am used to having to explain that I am being watched currently for MS. By the time I am actually diagnosed I should be a pro. HA!

You shouldn't feel any need to keep that part of you a secret. If people can't deal with it, too bad for them. But I know, it must suck when that happens.

Anonymous said...

I'm 32 and was diagnosed at 31. If i had it all to do over I myself would not have told me boss and co workers. But that is just me. Some people have diffrent situtions then others. Fighting discimination is hard. Most the time its alway in the employers favor.

Anonymous said...

I don't feel comfortable telling people. I want to because I have no support and would like support from somebody. I'm embarrassed and I'm not sure why. I did tell my supervisor and got a weird response. "What's that? I know I'm suppose to say sorry so I'm sorry." Then she immediately changed the subject. I really want to tell some of my friends to see if I can get some support. My family can't see anything so to them there's nothing wrong. I actually had a family member tell me I was lazy and selfish because I don't want to do anything. I feel like giving up sometimes. Thanks for listening.

Christopher Lee said...

I just found out I have nerve damage in both arms and both legs muscle spasms blurred vision muscle cramping specially in the breastbone that keep me from breathing sometimes. In 2010 I received and interferon and ribivirin. God just typing this trying to use voice typing is f****** flipping me out it won't recognize (ribivirin) now I have to type it in and that is such a f****** task. I want to commit suicide I'm tired exhausted just opening my hands in the morning f****** hurts. I have no one to talk to and I have no support I try real hard to not show it because I have a 12 year old daughter. But I feel I am losing the battle

Christopher Lee said...

I just want to die
Nerve damage both arms and legs muscle spasms cramping lost 90% of my strength lost 30 pounds of needed wait down to 140 pounds from 180 my vision is blurred it hurts just to open my hands or a walk my balance is off like I'm drunk the pain behind my eyes everything feels FucT I want to commit suicide now