thrillho 05/04/17
Last reply 1 year ago
Telling someone about my MS

Hi all! I’m new here and wanted to share something that’s been on my mind, that might be seen as an unusual situation, and get some opinions.

Over the last 13 months I’ve got to know a pretty great woman online, through a volunteer project I’m part of, along with people all over the world. She’s in the US and I’m in the UK.

We’ve been very close for a while and are very much into each other, though we’ve only been open about how we feel for the last month or so.

I was diagnosed with MS in 2014, and have been relapse free since around October of that year. My most recent MRI showed no changes in just over a year, and for the most part it’s been very manageable. I work full time, have an EDSS of 1.5 (down from 2.0 in 2014) and don’t suffer from fatigue. I have some residual and day to day symptoms that I’d describe as somewhere between annoying and somewhat unpleasant.

I’m one of those people that doesn’t tell many people or talk about it much – my employer and a number of close friends I’ve known for years are unaware I have MS.

But within this last month I’ve thought a lot about telling her, given that we both want to take things beyond where we are now, but I’m struggling with how and when. She’s a wonderfully kind and caring person, but at the same time works a pretty stressful job with long hours, and it’s obviously a lot for someone to process and take on, and it can of course be something not everyone feels like they’re able to do for one reason or another.

My thoughts also flicker between worrying that I’ve waited too long to say anything, and wondering if I should wait until we’ve spent some time together in person before bringing it up. Of course there’s never 100% guarantee that this will translate to things working out in “real life,” but I don’t know whether this is a valid reason for delaying or if I’m contemplating it as an excuse to avoid having the conversation.

As someone that’s not in the habit of talking about my MS, as well as having been single for a while, I’m really just looking for some guidance.

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stumbler
1 year ago

Hi @thrillho and welcome.

There’s a discussion of this topic of disclosure here, which may help :-

https://support.mstrust.org.uk/file/telling-people.pdf

It’s possible to have a “proper” relationship with a cyber-friend. This can include some of the features of a “normal” relationship, e.g. trust, respect, consideration, etc.

Having MS is not as if you’re about to confess to being a convicted criminal (well, I hope not!).

It’s also nothing to be embarrassed about. It’s just an unfortunate part of life, like an unwanted birthmark.

If the relationship is strong enough, disclosure will only bring you closer together. 😉


lucyh
1 year ago

Hi, would you feel betrayed if she told you now she suffered from depression? Probably not, you don’t have to be open about everything, it’s too heavy when you are getting to know someone…give someone time to know you first (as you clearly have done). Good luck! xx


Anonymous
1 year ago

Hey @thrillho – that sounds lovely and very romantic! Sounds like things are going well for you MS wise as well. I think that with on-line friendship/romance being honest with each other and communicating is even more important. In that I mean you can’t see the other person to know they are hurting or have something on their mind. So you need to rely on each other saying what’s going on and being honest. From what you said your relationship was based on friendship which is a good foundation to build any future together . I would be completely honest with her and tell her, she has probably been thinking about your future together and where you will live (If your on treatment a move to the US might not be possible if you then need to buy medication), she is probably planning your wedding as well. Yeah we totally do these crazy things! Lol

MS affects us all differently so you need to tell her what it means for you. You guys sound like you are in a good place so why would she run? I am a total romantic at heart and when someone special comes along you just know, it’s a feeling that is all consuming. It sounds like you may have found that.

Us ladies do like honesty but just be prepared if you do tell her there will be loads of questions- cause we like our questions too!

All the best and keep us all updated!


shazzyp
1 year ago

hi Thrillo
I agree that honesty is the best policy and that she needs to be aware of your condition just in case you find yourself in a position of being able to not communicate. You wouldn’t want her to think you’d gone off her!! At the end of the day the MS may become a logistical issue if you guys get together but she sounds the caring thoughtful type who will not judge you just because you are not “perfect”. Good luck .


arnoldgrant
1 year ago

LDR or long distance relationship it’s hard to be in that kind of situation, many have succeeded and many are not, so your chances are in the middle of 50-50. If you know each other you can figure it out if this will work in the end. If you don’t make a move, things will get worse so if I were you, and you’re really sure about your feelings do your job and take your chances. Good luck


thrillho
1 year ago

Thanks so much to everyone for your responses!

This has validated how I already felt – that the time to do this is sooner rather than later. I’m definitely much closer now to being in the right place mentally to go for it.

I’ve been thinking what I’m going to say, and the final hurdle, I think, is how to bring it up. I hate to just drop it on her out of nowhere/randomly bring it into a conversation after not previously giving any hints, but the “there’s something I need to talk about” approach also gives me pause, in case it makes it sound scarier than it needs to be. Thinking of whichever is going to be easiest on her here, rather than any potential impact on our relationship as a whole, with this aspect.

On balance I favour the latter approach, as it gives some prior warning. Coupled with an explanation of what MS is like for me (thanks @avrilt ), and I think it’ll be fine.

I’ll try and keep you updated. 🙂


Anonymous
1 year ago

Hey @thrillho you are more than welcome! Just glad you found it useful.

All the best!
Avril


lizab99
1 year ago

Sorry to burst your bubble but I think you need to realise that this will be a huge issue for people who do not understand ms. Many people immediately think it means severe physical handicap and panic. I do Not think it best to tell her online. After all you haven’t met yet and frankly you might not get on when you do meet. Why the delay in one or the other of you travelling for a short trip to meet. Nothing heavy at first just see how you get on spending time together for a few days. If as you say you are managing your ms so well I think it is being too dramatic to make a disclosure at this stage. Meet up, let her see you are ok and then you can discuss ms If you both feel you might want to make a real relationship out of the friendship. Best of luck 🙂

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