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Rem4
10-03-2007, 01:29 PM
Hello again,
As I posted before I was just diagnosed with MS, it is still overwhelming, and hard to accept. In the first few weeks when it was only suspected that I have it, but deep inside I knew I have it and when it was finally diagnosed by a specialist, I could not talk about it with my husband without crying and being upset. I could not even make the call to the MS society. The specialist put me on anti depressant called Lexpro and now I can talk about it with out crying and it almost feel as I am talking about someone else.

Here is my dilemma, my husband and my 2 sons (28, 26) know about it but nobody else. I told them that I am not ready to disclose it not even to my close family (parents, brother, sister in law etc) nor to my close friends. I thought once I start the injections (which I have not still not sure which med to go on) and I will master it I will tell my parents but will ask them to keep it a secret. I know that secrets are “dangerous” once you tell one person you have no control over the secret, a lot of time a friend will tell you I have a secret I was told not to share but I am only telling you…… but I do trust my parents and hope that they will respect my wish. I know that they will wonder why I am not telling my brother, but at the moment I am not ready, I cannot expect emotional support and I know he will tell his wife and from there I don’t know where it will go.
At the moment I think I will tell my parents soon, but I do not want to tell friends and others. Any suggestion? Anybody on this board has experience like that or advise? I would appreciate it, at list here I feel safe and I know I am not alone.

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MSJayhawk
10-03-2007, 02:19 PM
I tell everybody I know. That way there are no secrets. In 1982 I had to disclose to the military my condition. I have mad a point to tell anyone who works closely with me or is a friend. That way, when I get tired or need to stop, they understand and no feelings are hurt. It was and is a liberating feeling and relieves stress. Keeping your secret can place unhealthy stress on you.

It is, however, your personal choice. Do what you feel is best for you.

mitch512u
10-03-2007, 02:22 PM
Rem4,
If you aren't comfortable with telling anyone, don't. Do you think your friends and family will think less of you if you told them? What ever your reasons I'm sure that they are valid. With that said I hope it's not an issue of shame. There is nothing to be ashamed of with this disease. It's not like you did this to yourself, it was just the luck of the draw. Something you may want to consider, in my opinion, is that by keeping this a secret you may miss out on the support your TRUE friends would be able to give you. I know that in my case my friends and family have been tremendously supportive. One other thing to consider is just how long you will be able to hide your symptoms. Remember that stress can trigger flareups and that keeping secrets can prove to be stressful, so keeping the secret might prove to be counter-productive. Just my thoughts, take care of yourself. Mitch

LISAMCGEE
10-03-2007, 02:32 PM
Wow - I felt like I wrote your post! Yes I feel the same exact way! I got my dx in July 2005 and I am still in the denial stage. Obviously my DH knows and we told his parents and mine when it was all going down. His mother went and told a ton of people and I was very upset about it. I have since made sure she doesn't tell anyone else. (now I know I can't trust her). At the time I had to tell my then boss because I was out of work alot thru the dx stage, but i have since moved to a new job in the same company (been in new job 1+ years) and nobody over in my new dept. knows. I have to go 2x a year for MRI and follow up appt's with my neuro but I never reveal where I am going or why I need the time off. I figure if it ever comes to the point where I have to tell her I will, but in the meantime I am healthy and have symptoms that are visible to anyone else. I don't want anyone feeling sorry for me and I just want to pretend it doesn't exist. So far so good for me. I was on Avonex for the first year but have since gone off of it because we are trying for a baby. But I plan on going right back on it after that. Its a personal decision and to be honest, it would be awkward to have to tell someone (I don't want any attention drawn to my "disease"). I mean really who's business is it anyway? I have all the support I need from my family (I even keep it from my 8 year old son, he wouldn't understand anyway). Good luck to you - its a hard road emotionally and mentally. Do whatever you feel comfortable with. There is no wrong answer here.

kimpossible67
10-03-2007, 03:16 PM
It is your choice what you decide to tell and not tell. However, remember how tough it was for "you" to deal with the diagnosis, the ones that love you the most (parents, siblings) it will also be tough for them to deal with. Often, we need to vent to those closest to "us." It was hard on my parents, I have a cousin that has had MS for 15 years and I knew how upsetting it was for my parents on her behalf. Imagine their horror when their own daughter got it too. I don't like secrets nor having people keep them. I come from a long line of secret-keepers and I hated it. I'd rather be honest, if you can't deal with it, too bad. So far, I haven't noticed anyone treating me with pity and/or sympathy, they are just more thoughtful to how I'am feeling. Good luck in whatever you decide :)

Bearygood
10-03-2007, 03:34 PM
It really comes down to your reasons for and for not disclosing. Very few people know that I have MS but it's mostly for professional reasons. There is so much misconception associated with this disease and I know it would absolutely affect my business and any future job prospects. That said, I do feel that at the very least, it's important to share the information with some people you do trust because support IS important.

I wish you have peace with whatever you decide. :)

NCLynn
10-03-2007, 04:09 PM
I am not yet diagnosed, but I have been honest and told my family, friends and my immediate supervisor. I work from home and my company is very supportive...no problem whatsoever! Personally I feel better since people know. Like Kim said, it's easier to be around people if you are having any symptoms, get tired, etc., then people understand. It's nice to have people who care about you know what's going on. Besides, if they know all along, then should things get worse down the road, it won't be quite a shock AND they will be there to help you through it!

Hugs,

Lynn

mnewhall
10-03-2007, 05:54 PM
hi :wave:

i can totally understand where you are coming from, but also feel that it is definitely a stress reliever when i can be open and honest about it. PLUS, you never know who might be in your life that is dealing with symptoms of their own that could be MS and they are hiding them too and you just could be the one to help them by sharing your story and encourage them.

I am undx'd at this time but doc is 95% sure it's MS. I have suffered for about 20 years with physical ailments. I used to think of my share of physical problems and ailments that i have suffered were a "weakness" on my part. but now i know that it is not a weakness and that God allowed me to be blessed with them, they definitely keep me humble (LOL). That's what I tell everyone and nobody has thought any different of me and they don't treat me any different. they know i have good days and bad days and that I just roll with the punches.

God placed people in our lives for fellowship, friendship, encouragement and strength through any difficult times we may go through.

Yes, i believe that you aren't required to tell anyone and not everyone needs to know. i don't tell everyone, but if in general conversation it comes up, then i put it out there.

i will be praying for you for strength and physical grace. Remember, you are not defined by MS, you are defined by who YOU are and YOU just happen to have ms - it doesn't have you.

just my thoughts and i hope they are of some help for you. god bless you :)

blessings,
michelle

Rem4
10-03-2007, 09:28 PM
Many Thanks to everyone who answered me, it really helped.
The reason I am not telling and at the moment don’t want to tell is because I don’t want people to feel sorry for me, or label me, there are a lot of myths and misconceptions about MS second I am still struggling with the diagnosed myself, and not sure how to handle it. I know when I tell my parents it will be devastating for them, but I think I need to tell them for emotional support and also for them to understand when I don’t have any energy. I am still confused but hope to overcome it.

parisiancat
10-04-2007, 05:26 AM
It is all down to personal choice. I've told very few people. But I've always been a very private person.

I've told my parents and a couple of friends. It was tough at first, even just seeing their immediate reaction was hard. For the first few months they would constantly ask how I was feeling and if I was okay. Now, it's faded into the background I think. They see me as just me again, not their friend with MS. But if I feel unwell, they will pick up on that and make sure I'm okay.

All along, I'd intended telling other friends too, when I got used to the dx. Now I don't think I will. I find that with people that don't know, I'm more normal and do more normal things. Because I have to keep up. eg. even something as simple as going shopping. If I'm on my own or with a friend who knows I'll give up as soon as I feel a tiny bit tired. With people who don't know, I keep going and can always do more than I give myself credit for.

It makes me uneasy that people would know something so personal about me or think me weak or different. That's just how I am. With Everything. Not just MS. But I know that some people find great comfort in sharing and having support.

So it really is a completely personal thing. Think about it carefully.

kimpossible67
10-04-2007, 08:01 AM
Did anyone see the premiere episode of Desperate Housewives? The character Lynette has cancer and didn't want to tell any of her friends. She wore a wig and agreed to help out with a school function all the while she is ill from chemo. When a lady confronts her about why she hasn't done what she is supposed to and gets nasty, Lynette decides to confront her by pulling off her wig and saying "because I have cancer, THATS why" and this is how her friends found out she had been ill. It was really touching because the character didn't want pity from her friends but her friends just wanted to "be there" for her. It was a really good show and goes to prove, maybe we don't give those we care about enough credit. It IS a personal decision but I would rather have those I love on my team then go it alone. MS, isn't a disease I want to have and feel isolated. Lucky for me, I have a close friend (she was a co-worker) with MS so by the time I got it, they (friends/co-workers) were used to it because of her, lol.

MSNik
10-04-2007, 09:26 PM
REM.
Hey. I have been really lax about keeping up on posts this week due to job issues- but have had time to answer your questions about other things...today, i read this, and i wanted to put my two cents in..
Dont tell. Anyone. Until you are ready.
Denial, frustration, even depression come with finding out you are Diagnosed. Its so common and normal to feel like you are feeling, its almost scary. Especially when you realize that 400,000 people in the US alone, have MS!
You need time to adjust to this...and start meds....and get yourself together. You will do that. I promise...and believe it or not, it wont take years, only a few months....when you are ready, youlll look back on this post and wonder what you were so stressed out about..but, until then....

Two things. YES you will be judged. People who are your "friends" will worry about you unnecessarily and unless you want to start educating EVERYONE you know about MS, youre going to get mighty tired of explaining why you "look fine" and " feel like crap" ! When you have dealt with this for a few months and you actually do feel better, think how interesting it will be when you say to someone.." Oh, that bruise? Its from my injections...i give myself shots....why? Because I have MS..." And then they say "but you look so healthy" and you say "yeah, most of the time I am pretty healthy!" And, with that, you either open up doors to what MS actually is.....and at this point, youll be able to talk about it without breaking down and crying.....or you can say "ive had this for a long time" and leave it at that....people DO NOT have to know anything. I changed jobs 3 months after my DX because at my old job...everyone knew I was seeing doctors, being hospitalized, trying to find out what was going on..and when I did tell them what was going on, they all acted so strangely that in 3 months, even when I was feeling better, they were watching me out of the corners of their eyes, waiting to see me trip, or rub my achey legs, anything out of the ordinary..when I was passed over for a promotion which I thought I had in the bag, and knew I had earned...it was time to leave..
I started a new job a month later...I never told them that I had MS until my first relapse! At that point, I told them (after being out for 4 days) that the doctors suspected I had MS....thats it. Then, about 2 months later, I told the few people who needed to know that YES I have MS...but I truly left the date of dx unexplained...and guess what? I have never had another relapse since then (yeah, Rebif) and Ive nver missed a day of work. My boss knows I have MS...but he sees me traveling all the time, all over the world, and never missing a beat...what he doesnt know is that when Im exhuasted and feel like Im about to drop, I pull off the road and take a cat nap...or I finish my day early and go home...and then work twice as hard the next day to see more clients...guess what? He doesnt care if I work 3 hours or 13- as long as sales dont drop! He doesnt ask...and we dont discuss....and thats the way I like it.
Suggestion: use us. Use us to vent to, ask questions of, and bounce things off of....also, if you can find a newly diagnosed support group in your area, thats really helpful...between us (your virtual support) and having people in your neck of the woods to actually talk to..youll get all the info, support and understanding you can handle...you wont feel pressured to talk to "those who dont understand"....when you are comfortable with this whole MS thing, youll know.
we understand.
Hugs,
Nikki

tuckersmom
10-04-2007, 10:13 PM
REM... I too fought with whether to tell anyone. I still don't tell people unless there is a real reason to. When my husband's boss found out, he looked me up and down and backed up a few steps! He has since educated himself.

I did tell my family. Didn't do much... they still don't understand although I printed out information and have tried to explain things. They have the same.."you look the same so you can't have anything wrong" that many others on this board get. My mom still tells me almost weekly if I would just go to the chiropractor I would feel fine. My "friends" are so busy with their lives, there is no support there. The only place I have found support is here and my husband. I am so blessed to have him but have to say there are times when it has been a good few days and then whammmo and I have to say, "things have to be very low key today".

I completely agree with others who say, don't if you aren't ready. Everyone you tell with react differently. Their lack of support or reactions may be more than you want to deal with right now. They may surprise you and try to be supportive. Some just don't know what to say or how to help so don't do or say anything for fear of saying it wrong.

Take care of yourself.

Rem4
10-05-2007, 12:47 PM
Thank you for all the support and advices.
Yesterday I had a call from a support lady of the MS society, it was very good to talk to her she had a lot of experience too, diagnosed 1981, she also suggested support group. I contacted the society for counseling and support group, so I will keep you posted. I have to travel to New York next week for 3 days and I think after that I will start with Copaxone, (Avonex was not authorized by my insurance and I feel Rebif is too strong to start with).
Any one on Copaxone here, I would love to read your comments.
Thanks again to all of you, it has been a life saver to find you here.

glamour girl
10-06-2007, 04:14 AM
This healthboard was a great place to start with.. We're always here for everybody. Vent or chat anytime for advice. Seems you got great advice so far. Take care.

LaDeeDa
10-09-2007, 05:26 PM
I told no one, other than my husband, for over 20 yrs. I just figured it was MY business, no one else's. Finally my husband told me I had to tell the kids (adults) or he would because they were beginning to worry that I was a closet drinker. All that time I thought I was covering so well. HA! When I thought I was fine, apparently I was not. Once I sat them down and told them, it was as if a huge weight I didn't know I'd been carrying around had suddenly lifted. Keeping my secret was draining me of very vital energy.

You'll know when the time is right for you to speak up -- or not. It is a very personal decision.

adgoff01
11-12-2007, 01:29 PM
Thank you for all the support and advices.
Yesterday I had a call from a support lady of the MS society, it was very good to talk to her she had a lot of experience too, diagnosed 1981, she also suggested support group. I contacted the society for counseling and support group, so I will keep you posted. I have to travel to New York next week for 3 days and I think after that I will start with Copaxone, (Avonex was not authorized by my insurance and I feel Rebif is too strong to start with).
Any one on Copaxone here, I would love to read your comments.
Thanks again to all of you, it has been a life saver to find you here.
i started on copaxone back in april and i have had no major problems. the only thing i have had is minor site reactions. good luck

moore170
11-13-2007, 10:00 PM
I was on copaxone since it first was approved around 8 - 10 years ago. During this time I also took avonex for two years and had two courses of Novantrone. I had no reactions from it and my MRI's remained stable until last spring. Since some new lesions showed up on my last MRI I am now on Tysabri.

As for disclosing - I disclosed to my family, friends, boss, co-workers and employees as soon as I knew. Everyone in my personal life has been very supportive. The thought to not disclose never crossed my mind. I had 17 years of great support at work. Unfortunately my boss denied me a promotion because I had MS. She felt I wouldn't cause any problem because of my illness. Well, I couldn't let that happen so I filed a discrimination complaint. I didn't want the promotion but I couldn't allow her to get away with the discrimination. I won the case but lost my job as a condition of the settlement. If I hadn't disclosed this wouldn't have happened since I had exceeds expectation performance appraisals but I also would not have had the protection of the ADA. I found a lot of support from everyone at work and I was able to help a lot of people with MS.
There are so many pro's and con's regarding disclosure but if you need any protection or assistance from the ADA you have to disclose.
I would probably disclose again but I now know a lot more to think about first.
Candy





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