This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi folks,
While i'm getting used to the idea of having MS myself i'm having a dilema that i'd never considered till now.
Who do i tell and when?
So, i've told a few close friends and family of course but i've been able to give them a lengthy understanding of the condition and they've also done a bit of googling thank god!
But there's still loads of people that i know well enough that if i don't mention it i feel like i'm keeping a secret.
The first close friend i told early on (although i'd sort of known for 2 yrs and been in denial!) i told not to feel it was a secret and it was ok to tell others within reason. But then i met her sister briefly and was horrified by the patronising smile/frown when she asked 'hi, how are you?' i'm sure you know what i mean!
Of cause i didn't have time to give her the 'talk'! Aaaarrrgh!
For instance if i'm having lunch with someone who i don't see everyday and they say 'so, what's new with you?' i'm gonna have to say 'well i have something to tell you, but prepare for the lecture'! or i say 'oh y'know... the usual'
To be honest it's not physically noticable at the moment and may not be for years i've got a feeling that people who don't have detailed knowledge of the thing will just start seeing 'VICTIM' written on my forehead!
It's a bit like throwing a party and not being able to invite everyone! Who make's the cut?! lol!
'Cause once it's out, it's out.

I'd love to hear everyone's experience of this, it's something that you can't make people understand unless they're in the same boat.

One specific and more pressing problem is that i'm going abroad for the weekend with 10 people who are friends but more like close colleagues and we'll all be excitedly going through airport security together as we have before. only this time i'll be carrying injectable drugs!!!! Is this gonna force my arm? am i likely to be exposed!! lol!

Cheers in advance guys! (any funny anecdotes welcome!)

Lou

Hi Lou

I was tentatively diagnosed in 1996 and then positively having MS a short time back. I did not tell anyone then and neither have I now. I don't have any of the symptoms, I only found out whilst getting treatment for something entirely different.

I personally didn't want anyone to know purely for the same reason as you, I didn't want to be treated any differently and to always be asked for "updates" from those that would know.

It is totally your own personal choice and if you don't want people to know then certainly keep it private. As for traveling, I have read here in the forum that if you get a letter from your doctor stating what the meds are being carried for you shouldn't experience any issues at the airport, plus if anyone traveling with you asks, tell them oh I will tell you when we get through airport security and then say it's to treat severe migraines I have been getting, it's just a short treatment, but requires injections as all other meds have failed. Or just make something else up. People only need to know what you are comfortable sharing.

Good luck and enjoy the trip

Mirry

I've bveen goin through scans n doctors appt's for the last 3years on n off n my friends and family have known all along. I have no problem in talkin to my friends about it, but none of my mates know...people I'm not as close to but still socialise with alot. I don't feel they need to know really, they're only people I enjoy goin out and havin fun with, the others are people I actually spend time with. If it comres out then I'd tell them....I have no problem in people knowin really, I'm not sure if that's a good thing or not really!!

Most of my friends and closer customers know. I am in sales so relationships are key. The funny thing is you'll find out that someone close to them has it as well. Much more than I thought would happen. Most of the time friends forget anyways and don't realize that I can't still do some things.
It's up to you but people may think you are blowing them off otherwise by declining their invitation.
My question is on what date do you tell someone you have MS?

That's true, people i dont tell will assume they weren't trusted or close to me as they thought and that's not what i want.
But if i don't tell them it's not generally known, they, understandable will want to tell their friends/partners purely out of concern, and so on.
I'm in a small town and although i realise there's no shame in it, i just don't want everybody's first thought when they hear my name to be 'MS'.

I think it's good that you are giving this some thought. I didn't have that opportunity. When I was first diagnosed, I had to cancel out of a public presentation and have some colleagues substitute in for me. So right away my colleagues knew. And the hundred or so people in the audience from my not-so-big town knew that something medically serious was up. Then there was my husband at the time. He felt the need to tell a lot of people in our social network. I didn't stop him, I figured he needed the support.

I have no regrets about my work colleagues knowing. They are smart people and have been very supportive without being patronizing or overconcerned. With the social network, if I had to do it over again, I wouldn't have revealed it beyond my inner circle of friends. However, it really hasn't been a problem. For a few years I'd cringe at having to answer the "how's your MS" question at parties. Now I don't. Instead I take it for what I believe it truly is: genuine concern. And there are times I find myself assuming that everyone knows, only to be surprised that someone I know pretty well is finding out for the first time.

I am doing really well and I myself forget sometimes that I have MS. I think other people have stopped thinking about it so much too.

As for dating...I am no longer married and have had two relationships since the divorce. With both, I actually used my MS diagnosis to emphasize the importance of them having a clean bill of health before I'd get intimate with them. I told the first man on our 3rd date because it was clear we were going to be seeing each other for a while. He ended up having issues with what he perceived to be additional commitment and responsibility that comes with a partner with MS. It was one reason he cited for wanting to end our relationship. He also thought that I was too casual with how I told him in the first place. I think I told the second man on our first date (!). He was someone I thought maybe already knew anyway (we share some mutual friends) and our chemistry was such that it was obvious we would be getting intimate. Why waste time?! I tried to be less casual when I told him. 6 months later we're still seeing each other and it doesn't seem to be an issue, maybe only because I'm doing so well (despite how wonderful of a person he is, I'm still somewhat of an untrusting cynic).

that's a long post, but to sum up...go with your gut on a case-by-case basis. And if the secret does get broadcast wider than you like, it still might not be as bad as you think it will be.

carolsue

I didn't have the choice, my wife told anyone who would listen.....I still get a little pissed when I think about it. Don't honestly think I would have told anyone.

Cheers

This has been on my mind so much, but i hadn't considered what it would've been like if i'd had a sudden relapse that was obvious and needed explaining.
Then i remembered that when i had optcal neuritis 2 yrs ago i did mention it to a few people that ms was mentioned while i was in hospital, but since nothing seemed to come of it i've assumed they will have forgotten.

Your posts above have made me realise that i have to tell people, no matter how gradually.
This will be much worst if i say nothing until maybe a time comes when i can't hide it.
Because it will be a time when i'm at my least able, emotionally, to deal with answering questions.

tnx x

I like to add my boss's wife made him read up on it to understand what I was going through. That was very nice of her.

I stopped her dead in her tracks! My wife was like 411 on MY condition! Whille I understand that it affect both of us, it is MY condition. The only people that know is close relatives and my parents. In my opinion, its a "need to know" basis ONLY. 90% of the people you tell will have no clue anyway. Work especially does not need to know. I do not feel the need to tell friends my "secret", it's none of their business....My Opinion

_________________
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.

My mum did the same thing - told the whole world.

I was already married so my husband knew I was going through dx process but it took a year for him to really get it. Apart from that, I am pretty open. I don't shout it out to everybody but if people ask, I tell them. I don't want it to be a taboo. You can't avoid people who will be patronising, I think they just don't know what to say.

Ultimately, do what you feel comfortable with. It's easier if people you intereact with regularly know. I don't have to try and hide stuff and it means they don't make a fuss when I fall over etc.

I work in a pretty demanding job so I told everyone. My MS diagnosis came a month before my first child being born and I just haven't been able to do as much so I didn't want them to think I was just being lazy.

Me to, I am a cop. Therefore I want NO ONE to know. Ignorance is bliss, the last thing I need is a sarge freaking out thinking about high liability issues. If and when it becomes apparent (MS) and I can no longer hide it, then I will notify those who need to know.

_________________
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.

I'm not sure that this will help your decision. I was recently diagnoses (June), and have been struggling with the same decision. Close family and friends new that I was struggling with symptoms that were being followed by a Neurologist, so that made it less of a challenge to tell those people. My major struggle is with work. I have had virtually no visible symptoms until recently, when I had an exacerbation. I feel strongly that my chaotic schedule at work over the last few weeks (60+ hours/week) was a contributing factor to my having a huge setback. I had been doing so well with my adapted 'MS routine' (meds, exercise, alternative therapy, diet, vitamins/supplements, etc) until the crazy hours ran down my body, and caused me to catch a stomach bug that was THE worst stomach bug that I have had in over a decade. That seems to have caused a domino effect and now I have lost the feeling in my right hand and food, had a significant increase in spacisity, loss of energy, etc.

Well -- didn't mean to blab on about ME. I just wanted to share enough to let you know that I completely understand why you are struggling with the decision of who to tell. To use my situation as an example, I don't think that anyone should HAVE to share personal health information with ANYONE. However, the question that I ask myself daily (lately) is this: Will telling someone/anyone help to limit my exacerbations or help to manage my exacerbations? At the end of the day, we have to protect ourselves and do everything that we can to manage exacerbations.

Explaining symptoms is the least of my worries. Example, leg spasms: Why are you limping. Oh, I have been having leg cramps lately, and my leg just stiffens up when I sit too long. Then, people usually drop the subject because you have given them a plausible answer. Another example, vertigo: Do you mind if we take the elevator (instead of an escalator), I have a touch of vertigo that has been bothering me. "Oh, really, what is it from?". Oh, I have always struggled with ear problems that have caused balance issues .... some days are better than others. Again - plausible answer, dropped without further discussion.

Granted, Optic Neuritis can more of a challenge to explain, but you get the general idea.

I have seen SO many people respond to like threads saying, ABSOLUTELY NOT, don't tell. At the end of the day, it is your decision and you have to ask yourself if the 'don't ask, don't tell policy really works for your situation'. Everyone has a different life situation (family, friends, work, etc) which translates to -- it has to be your decision, based on your life.

I was diagnosed in 98, just months after making detective assigned to narcotics. Outside of one partner, and the city nurse(avonex shots ) no one knew until just before I medically retired in 07. Interestingly, there was another officer who was DX at about the same time who let it be known openly. He later told me that he felt like it ruined the remainder of his career.

I do not regret holding it back, I was abe to progress further, doing things that the administration would have likely not have OK'd if it had been known. Of course with that said, my progression has been blessedly stable, and it would have been wrong to continue if I thought that I was putting others in harms way.

I did get a little bit of the cold shoulder from people I thought I was friends with. I like to attribute it to shock and simply not knowing what to say, but... oh well.