Just found out about boyfriend having MS - cannot tell anyone - isolated

Hi, I`ve replied to you re this on undiagnosed board.


Hello Bee. Sorry to read about his suspected diagnosis but I really wouldn’t worry about the secrecy thing. Don’t read too much into that because it may be a sort of denial. I did the same thing, didn’t want anyone to know, didn’t want to worry anyone, didn’t want anything to do with MS and just wanted it all go away. I wasn’t deliberately being secretive, just wanted to keep it to myself and not upset anyone else. It was about two years before I told my parents as I knew how they would feel and I wanted to spare them that for as long as possible. They understood. So I would take it at face value that he didn’t want to worry you, it’s a lot to get your head round when it’s happening to you and he probably didn’t want to burden you with that. As for his family, it’s his call when he tells them. He will when he’s ready, perhaps when he has a confirmed diagnosis but even then if he’s well he may not want to. Best to you both and good wishes for the future. Val

Hi Bee

I’ve just been down that really long road with constant conflicting diagnoses, constant probably ms, no it’s this, then could be ms, no it’s that etc. My family have been through hell for nearly 2 years. I’d give anything to turn the clock back and do it differently. That’s me though, everybody copes differently. I fully understand why he’s doing it like he is. If you read posts on the part of the forum discussing before diagnosis you might understand that getting a neurological diagnosis relies heavily on elimination unlike other illnesses that a simple blood or urine test will give a positive or negative result.

It’s difficult but stand by him and try to respect his decisions, he will have reasons. He will probably open up to you a little and appreciate how much support you can give him but if I was in your shoes I’d leave the whole thing alone until he feels ready to talk about it. You can come to the site at any time if you want to. As Poll said you’d probably get the most answers and support on the “undiagnosed” board.

Take care and feel free to ask anything you want, the people here are lovely and have experience about all aspects of the illness and the road to diagnosis.

Min x

Hi bee i understand this is a very worry time but if you are a strong couple you will come through this stronger.If not this will be one of many tests you will get together and its a make or break situation .Hopefully you get good news and even if it is ms life doesnt have to stop many be slow down a little julie

Hello Bee,

My partner was diagnosed with Relapsing Remitting MS around the time we met three years ago; I was worried about how this might affect my life, and more than that what would happen to her in the future. Now we are engaged and looking forward to life together. It was about 3 years after she was diagnosed that she told most of her family, and a similar amount of time for her to tell them that she wants to marry a white guy (they are Indian), there are more important things in life.

The most important thing for us is quality of life and making the most of things while living is good. We talk about children and houses (other circumstances have prevented us from buying a house together so far), and we both want to do it all, perhaps a little sooner than we expected but no one knows what might happen to them tomorrow, with or without MS.

I love her so much and we will live our lives together no matter what happens years or decades down the road. My advice would be live for today and plan for what you want to do in your lives. There’s nothing wrong with making contingencies too, but don’t let them get in the way.

Hi Eddie, just wondering how things are going for you and your girl?

I do hope it is all working out well for you both.

You sound a great fella.

luv Pollx

Hi, I knew I had MS for 4 years before I even told my mum! My husband knew but no ody else. It’s hard to tell people because you don’t want them to treat you differently. I was also concerned that my hubby’s family would worry about him having to look after me in later years. If his symptoms aren’t visible just let him tell people in his own good time. It’s hard being diagnosed as it can take a long time and is a bit like going through the grieving process a few times over! I thought I was fine and on a bad fatigue day I sobbed in the car why we 4 years later lol… Gotta see the funny side! I hope this helps you understand some of the reasons why he’s not telling anyone. Main thing for him at the moment is he needs to accept it himself, and that’s hard. See if he will let you tell a best friend or something so you have someone to talk to aswell. Good luck:)

Hi Bee! I have MS for 31years & hubby is my carer his choice not mine. He woks & take me on holidays abroad every year & we are due to go to Maurrittius again for the 9th time bless him. MS is MS & sure you won’t leave to run your & husband’s life. Take care RE

Hi Bee

I understand how upset you are that your chap didn’t tell you that he was having tests. I would have been upset too as I wanted to be there to help my wife Shazzie (Shepherdess) though all the tests etc.

He will have a good reason for this though so try not to take it to heart. He may have been trying to protect you in a funny sort of way.

Also, Shazzie having MS for the past 8 years has brought us closer together if anything. We are always laughing and like Eddie has said in his post above I love her more than anything and the MS isn’t a barrier in our relationship at all.

If it is MS just take all the help and advice offered as this will make your life easier and happier.

Hope this has helped