Just curious, when did you all break the news to family/friends I have yet to breath a word of my dx out. My wife and sisters are the only ones who know. But if my kid did that to me I would be furious. I just can't bring myself to do it, and if they can't notice what harm am I doing then. It's been bugging me for a while, but my mom is a stress already so it's tough.
Then work, I told a colleage about the dx and to my surprise his wife had MS., he gave me the advice to not say a word until I had to because it would change attitudes. She had to change jobs because it got weird.
I have a family that is very close and supportive, and I told them when the initial tests looked like it would be MS. I wanted them to not be surprised by anything that might come along.
I have an extremely intelligent and compassionate work supervisor and a co-worker who is also a friend. They were also told when I was going through all of my testing. My need to be off work repeatedly for testing needed an explanation, and it was better to tell them they were looking at MS rather than something even more devastating.
When I had my dx, I decided it was not worth the energy to me to try to conceal my disease. I work at a university and our last president, who is still active on campus, is much loved and revered and he was dx'd over 20 years ago with MS. There are also two other people in my building who have MS, one is a professor in my own dept. The precedent of how I would be treated was already set.
I continue to be thankful that I work in such a caring environment .... not everyone is so fortunate. You really need to gauge your own work situation, but if it is a large enough company you may want to at least consult with your HR department.
But please consider telling your family soon. I imagine this is quite the burden of a secret that you and your wife and sisters are sharing. Be prepared to answer their questions and then let them have some space to figure out you are still the same person.
good luck in figuring this out - we all handle it differently.
Tell people when you are ready to tell them and when you tell them its up to you on how you want it to go..have your information ready if they have questions and such...my approach to it all is cheerful about it kind of. like no big deal type of wording and some might not even know what to say after you tell them and thats ok just make sure you have something to say so it dont get awkward lol thats how i go about it i was diagnosed july 09...i just got a new job in oct and didnt tell them the very first day after work went into a total relapse i consider it my first relpase couldnt walk or talk or think..my mom had to call and tell them why i wouldnt be in cause i couldnt talk properly at all but they want me back still! lol so my new approach to work is definalty tell them..if you have kids definlaty tell them and be honest
Only my husband and best friend knew for the first several months. My approach was VERY gradual; I knew once I let the cat out of the bag, it was out and I lost control of the information. I told close friends, one at a time, over several months. One friend I just told last week, and it's been two years since my dx. There were a few reasons for being so slow to disclose: one, I found it very upsetting to discuss and for the longest time couldn't say "MS" without choking up; also, I felt really embarrassed and ashamed about it, weird I know but that's how I felt; and most of all, I couldn't stand the thought of being pitied.
I did end up telling my employer after several months of being off work and no sign of when I could return (I was off a full year); I figured it wouldn't hurt for them to understand I was off for a valid reason, not that I was questioned, that was my own issue. Once I let it out, until recently I had no concerns about it being known in my workplace; they have been very accommodating and take the legal duty to accommodate very seriously (I know, I work in HR). However recently it came to my attention that my supervisor had made comments about my symptoms to a co-worker; I was upset by this but have not addressed it with her, rather am taking a cautious approach in not reacting to this and waiting to see whether she brings this up, ie: if she has concerns relative to my performance, which would be a surprise to me. My advice is to think carefully before disclosing to your employer; it all depends on how much trust you have in them that they will do the right thing; that you have recourse should you have concerns re: accommodation, discrimination, etc.
I had no intention to tell my mother (no contact with father for many years). She has health issues of her own, is prone to dramatics, and I knew would be on my doorstep before I hung up the phone. She is probably the most emotional person I know, wears her heart completely on her sleeve, and I worried she could not be able to keep this confidence. As we don't live near each other and only visit every few years, I figured I could keep it hidden, no need for her to know, and I had more than enough support from other sources. Unfortunately my MS had crappy timing as my dx coincided with a trip to meet up with her in another city for a visit. I considered lying about why I couldn't go, but I knew anything short of the truth would result in her being furious for my cancelling, and I didn't want to deal with that, so I told her, after she swore to secrecy. Of course I later learn from her that she divulged this info to many friends and relatives soon after, and I regretted telling her, at least before I had time to digest this information myself, and had the opportunity to disclose it to those individuals on my terms. I am no longer furious, though still moderately irritated by how this was handled and it reinforced for me that I shouldn't disclose things to her that I don't mind anyone and everyone knowing. That's just her way and I can't expect that she'll change, no matter how much she protests otherwise.
As MS can be an invisible disease, my advice would be to disclose it on a need to know basis. If I'd not needed to cancel vacation plans, miss such a long period of time from work, etc. I definitely would have been much slower to disclose, at a pace I would have been more comfortable with, though the end result probably would be the same in that it eventually would be out there.
The flip side, esp for those doing well with their MS, is to disclose it so that people would have better understanding of the disease, and so folks like us wouldn't be so horrified by a dx because prior to our dx the only people most of us knew with MS were in wheelchairs or in some other way visibly disabled. Showing others that one can have MS and have a good, productive life might make dx less scary for those who come after us.
I'm all for the talk, tell the kids! My son did what most young kids do, he blamed himself for mum falling over etc. "I'm bad and hurting mum because i'm not a good enough son, i wont tell mum any thing bad i'll only tell her things that she'll want to hear" etc, you get the drill. I had no intention of telling my kids that i was even having tests, i thought it would be easy for them not to know there could be something wrong. Pretty stupid really, they knew i was hiding something but still they thought what ever it was, they had caused it.
I still dont have a dx but it has been better for them knowing why I'm being tested and we all have are fingers crossed that it is something that can be easy fixed, if not then they are prepared. They internalised how they felt about me, scared, blaming themselves and thinking really off the wall thoughts, not knowing was making them sick, so I would find a gentle way of explaining why you have trouble keeping up with them sometimes.
As for everyone else, then I would tell them when YOU feel ready, i figure if they have a problem with the dx then stuffffff them, there's nothing you can do to change that, its basically their problem.
Whenever you decide to do it, please be prepared for them to grieve in their own way. I thought this diagnosis was all about me and it never occured to me that my parents would take it so hard. My mom got on the horn and cried to all of her friends and sisters, so once she knew everyone basically knew. I wish now I would have told her not to do this. I now have no control over who knows and who doesn't. And the people who do know aren't sure how to bring up the subject to me. It's pretty awkward for everyone.
Because I lived hundreds of miles from my parents and saw them a few times a year I didn't see any point in worrying them with my dx.
They were elderly when I was dx and their perception of MS was probably the "will end up in a wheelchair" one.
My Mother lived for 5 years after I was dx and my Father for 13, they never knew,
I did fall once when I was with my Father out shopping, I blamed the uneven footpath.
I was probably wrong to hide it from them, I don't know, it was a worry neither of them ever had to go through though.
I suppose my circumstances were completely different to most, given their ages and the distance.
I told my children quite quickly because they knew I had been going to the hospital for tests. - Thank goodness I did because when one of my daughters started to get symptoms she knew what to ask the doctor about and insisted on seeing a neuro and getting an MRI as soon as possible.
My husband and I are hesitant to tell his family. We only see his folks once a year. His family says some unkind things I have the bare in silence because they do not know.
My brother is the only family I have left. It has been hard on him because I was born on his eleventh birthday and we have a special bond. Also he has lost both parents and a sister in recent years. I assure him my MS is not fatal and I can live a good life insipte of it.
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