Last reply 1 year ago

Hi all,
I’ve had MS for over 2 years now. The first year I was shocked and silent (only my husband knew) and my husband handled it worse than me. I spent my first year being positive for him (and probably buried my feelings in the process). The second year I told my Mum and spent that year trying to be positive to support both my Mum and husband (further burying my feelings). My MS symptoms at the moment are easy to hide, so my kids and wider family do not know. I don’t really have anyone that can support me emotionally, so I haven’t been in a hurry to tell anymore people. Instead I saw a pychologist and this was a real eye opener for me… She suggested that perhaps I have emotional deprivation from not being able to open up and release my deep down feeling especially around Being diagnosed with MS and what that actually means for me now and in the future… she also sensed a degree of loneliness. This bought tears to my eyes as I never thought of myself as lonely as I have a family, I and reasonably extroverted and chat to anyone… but she was right… I don’t have those deep connections where you can just be with someone and really tell them how you feel. And they just listen without trying to move you through the feeling quickly to move back into a happy space… this pychologist has hit a raw nerve and I am questioning so much about my life. I feel like I have to go back to that time when I was first diagnosed and sit with my feelings to really know how I feel about it all, without trying to protect those close to me… I don’t think I want to emotionally do this on my own; but I sense those close to me aren’t emotionally capable.

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1 year ago

We’re here all the time, you can have a rant, a cry, a celebration, it’s all something we’ve done before, we don’t judge, take anything personally and we’re quite a nice bunch, we may never meet but you will make good friends here, so welcome staying connected, and wether you tell your family or not, we’re here😍 Jill

1 year ago

@staying-connected , it’s the nature of the beast, I’m afraid. MS is one of those taboo subjects, which are all too often avoided. So, general awareness is sadly limited.

It is difficult to open up on a subject, which is not really understood. So, any feelings that you may have are difficult to communicate.

This is where this community can be so beneficial, we just understand. 😉

1 year ago


I avoid being down that road. My wife knows (god she is is Great with capital G) and my best friend also. 1 chance in 2 that one of them was not going to fully understand, glad it was not wife.

I dont want to tell anyone else. Not because I dont need to but, like you say, because handling the problem others will have in understanding MS, is, per se, a problem iself.

@stumbler is, as usual, right: that is why this community is so helpfull. So remember, we are at the distance of a link and click on your mouse. :p

Be strong.

1 year ago

Hello @staying-connected. Sometimes, you can be surrounded by loved ones in a familiar room and you can feel the loneliest person in the world. Speaking on behalf of my Shift comrades, I think many would say the same. Your coping mechanism is indeed valiant, in that you have deflected your own needs in order to focus on others. Who knows, maybe it will transpire that in those two years, your in-built protector found it easier to focus outwards.

I hope you can continue maybe with psychotherapy? Now the lid is off the box, it would be good to be supported on your journey. Maybe to start back at the beginning would indeed help, not least because you will be a whole lot stronger now that back then. I feel for you. But you’ve already shown your strength. I feel that you’re gonna be OK x

1 year ago


As usual, I might have the wrong perspective yet it works for me. I am what I am; if anyone has a problem with that – see you later & have a good life…

I have no problem telling anybody about my MS. I state it as a fact if they might need to know, then the discussion goes to other things. MS is part of who I am; a very small part so far.

A few told me that I am handling it well, my response is always the same. Life is a journey & we all have the same destination. This is just a speed bump on my drive… 😉

1 year ago

It’s very challenging letting those around you know about your diagnosis. It can be especially difficult if your family members are in denial as they don’t want to believe it.
I found the MS Society to be a great resource, they provide alot of literature which I gave to family members and work to explain what MS is and how it’s effecting me (they even have children’s books).
For talking about my MS this community has been brilliant as who better to speak to than other MS sufferers 😊 There’s a level of support and understanding that you can’t get anywhere else.

@grandma thank you for your warm welcome and kind words.

@stumbler thank you for being a big part of this community and sharing your wise words.

@hmcampos I loved your post about your wife holding your hand while having an MRI. That will say with me. It’s a beautiful image of love. So sweet. Thanks for writing to my post. It was a great way to wake up with so many comments back 🙂

@vixen your reply brought tears to my eyes. You have a great empathetic ear and very wise words. I think you comment “your inbuilt protector found it easier to focus outwards” has great truth. I have found a great psychologist, but I didn’t realize what we were going to uncover. It feels very unknown and I guess has brought up some anger that I can’t lean emotionally on those closest to me. I do accept though, that the only person I can change is myself. It feels like a long road ahead, but one worth travelling. Thanks again for your precious words.

@edmontonalberta you seem in. Great place which is lovely to hear. I love your last line “Life is a journey and we all have the same destination. This is just a speed bump on my drive.”

@spangle thank you for your words. Yes there is a great amount of support out there for MS. I do feel for people with obscure diseases that have very little support or knowledge about. The MS support is wonderful and for that I am truly grateful.

1 year ago

Loneliness is a common problem with MSer’s, I once told my husband that I was lonely. He told me to go out and make some friends. I had some friends but they just disappeared after I was diagnosed. Nobody can understand what you are going through but another person with MS. I tell everyone I meet anymore that I have MS and try to inform them about the disease. I connect with the people on the forum and have given up on making new friends. I rarely feel lonely anymore. Potter

1 year ago

Hi @staying-connected Welcome to the forum – looks like you found the support right here 🙂 I’m the opposite to you where pretty much everyone knows that I have MS – if it comes up why I do this or have to do that I tell people – I’m like @edmonotonalberta it’s their problem how they deal with it – if they ask questions that’s fine if not tat’s fine too. I’m planning bake sale for & running 2 half marathons this summer so I decided to tell the entire university via a blurb in the staff newsletter – I have received 3 very personal emails from people in similar positions & it was so lovely to hear that they felt a connection because I opened up. I know it’s not for everyone but you might be surprised how many people are in a very similar situation to you and open up once someone shares. I do know not everyone can or has to be the first to share and be open but I have had mostly great responses. Good luck for your MS journey!

1 year ago

You’ve been upset by the emotional truths the psychologist has uncovered, but now they’re out in the open you truly know what you’re dealing with. A lot of stress is caused by the NOT KNOWING: in the absence of knowledge the brain (+ Dr Google) will fill the gap with nightmares. We can’t accelerate the process of coming to terms with the condition, but once we’re on that road, each little step can be celebrated – whether that’s finding a new friend, enjoying a previously stressful event or simply realising that you’re not thinking MS 24/7. By taking the lid off, painful though this is, you’ve started the process. xx

@potter thanks for sharing your journey on combating loniness. I think I am at the beginnings of my journey in first accepting that I have MS, then dealing with my emotions and finally being open to others. Yes I agree this network group is fantastic. When I open up too all, I hope to fundraiser for them.

@stephz I love your energy and inspiration! Thanks for sharing. It’s given me ideas for my future.

@cameron such wise words, I truly enjoyed reading your post. I feel like I’m at the beginnings of my Journey again, but this time I won’t leave my emotions behind. I also plan on getting the support around me to finally tell my children so I can be honest and also open up to the world. I feel like I am only half living my life by holding onto such a large secret. I’m sure with family counseling I can ensure that my Childrens fears/emotions can be supported and they’ll be fine. They may even end up stronger by going through this with the right support.

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