Anonymous 09/02/18
Last reply 5 months ago
help? recently diagnosed partner

hello to everyone. I’ve been visiting this forum for the past few weeks, since my partner was diagnosed with MS. we’re both very young (21 and 23) and I’m really struggling with this situation. I just don’t know what to do or how to deal with this in general. the first weeks were better in a way, I was ok trying to be for her and to mantain things as ‘normal’ as possible. this means that we didn’t talk much about her dx or how she was feeling and I thought that it was ok, that maybe my ‘role’ in all of this was to keep her kinda distracted, to make her laugh, to keep the parts of the rutine we had that were still possible. the thing is that I just assumed all of this because she doesn’t really open up with me. she didn’t before, and since the dx it just got worse or maybe it feels worse because of the reason. I feel bad because she says that I’m putting pressure on her by asking some questions or wanting her to open up. yesterday for instance, I wanted to go to a place, she apparently didn’t but wasn’t really clear on it, she just asked me if I wanted to go THAT much and said that I should go alone which wasn’t an option for me. after that she went to lay in bed which is what she usually does when is sad or something happens and I tried to talk to her and she wouldn’t even look at me. I asked straightforward what was that made her sad and she just said that she didn’t want to answer that. I feel really bad and selfish because I was unable to just take that and idk hug her and be with her. I basically started saying that I needed her to open up with me, which is 100% true but it wasn’t the way to say it. I was feeling very overwhelmed and when I realised I was very off I went to another room to calm down and after a while she appeared keys in hand and ended up leaving after a while of me trying to make her stay. I feel terrible sad, ashamed and lost. I feel that I can’t control the part of me that is dying to have more information from her. I guess none of us is completly ‘right’ or ‘wrong’ in this. I know I behaved badly because the last thing she needs right now is fighting with me, but I also know that I need more from her. I’m afraid she can’t (understandably) give me that right now, it has only been weeks weeks since her dx, but I also just don’t feel capable of dealing with this. I love her so much and would like to make things better, I don’t want us to break up but I’m scared of making all of this just worse for her.

sorry for the length. I hope someone can help me out on this.
thanks a lot

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edmontonalberta
5 months ago

@rookie

It appears you described the challenge properly. She is afraid not only of the present but her future. She faces this fear every minute of every day; she does not want to talk about her fear because that depresses her (some women do but it appears you have one who does not).

You were correct that it is part of your responsibility to distract her, to make her laugh, etc… But when you typed that you don’t want to break up with her – this is one of her fears – you being there for the good times & walking away when a “life changing” challenge shows up.

I have been through this – lost my first wife to Scleroderma 24 years ago. My present wife was diagnosed with Lupus 16 years ago. And I received my MS diagnosis two years ago.

Are you interested in hearing some of my stories?


stumbler
5 months ago

Hi @rookie and welcome. It’s good of you to join us on behalf of your young lady. It shows how much you care.

However, she does need a bit of time and space, to understand her diagnosis. This is a very emotional time, with moods that can go up and down frequently. Anyone receiving a life-altering diagnosis starts on a journey of various phases :-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

So, it would seem that she’s presently in the “shock” stage. And, you just need to be there for her, to hug her, but let her untangle her thoughts in her own time.

There’s some good reading for you about MS here :-

https://support.mstrust.org.uk/shop

under the “Newly Diagnosed” tab.

She’ll soon understand that MS is not the same awful diagnosis that it used to be. There’s now many treatment options, which make MS a manageable condition, which allows life to continue with minimal changes.


vixen
5 months ago

Hi there, the world needs more people like you in it, I’m sorry for the trauma you are both going through. Lots of people, myself included, talk about trying to establish what a new idea of normal looks like after diagnosis. That’s what your partner is trying to do, and I would say it’s taken me a full year since diagnosis for me to do that. I think it’s even tougher to do at your age, as you haven’t even had many years as an adult yet! You need to be patient, but not to forget to live at the same time too. There are gonna be tough times, but also remember that the world of MS has seen many breakthroughs in recent years and so there is great hope for the future, especially being so young. Do whatever it takes to get you through and accept whatever help and support is available. Threat yourselves often, and remember that sites like Shift are here so that you don’t feel so alone; we’ve all been through it. Take care x


kimiblanc
5 months ago

Hi @rookie, I think it’s really brave of you to come on this site. I have MS and was diagnosed @ 20, currently 26. I was in a long term relationship not that long ago and I think what I learnt is that the partner/family etc also need to accept the diagnosis themselves. I know this sounds quite simple but I was completely oblivious to others close to me having to accept the diagnosis as I was accepting it myself. Your gf is going through a wave of emotions so i just wanted to say, and I’m not suggesting you are doing this, to not take things personally. Be kind to yourself. Happy to chat further via private message. Kim


zoeb
5 months ago

Welcome to the site, and thank you for being really brave and coming and sharing your feelings.
I completely agree with what has been said – this is a very frightening and unknown time for your girlfriend. Like @stumbler said, she will need to go through these seven stages and process this life altering diagnosis herself. It sounds like she’s in shock at the moment, although there may be elements of denial too. She will go through all the stages of grief in her own time, in whatever order and she might revisit some of the stages more than once. As you love her, I’m sure that you will be there to support her through all of that. It’s onlh been a few weeks, so this is new to the both of you.
One thing that I have learned on my own ms journey with my family and my husband is that they needed to also go through the process of coming to terms with the diagnosis too, before finally accepting it. You’ll also be in shock. This is such a difficult time. Looking back at my own relationship when I was first diagnosed, I definitely struggled with how I should be around my husband. I felt I’d lost a sense of who I was, and I was afraid for my future with him. I didn’t know what it was going to look like anymore. I was unsure if he’d still want me, or if he would love me knowing he might need to be a carer for me. These are possibly all thoughts that your girlfriend is having.

Take some time to both come to terms with it. Be strong and be there for her. Hug her and remind her that you love her, like you’ve posted on here. She will come around to talking in her own time. Until then, maybe recommend that she comes on somewhere like here for support from other MSers who can offer her words of strength.

We have a buddy scheme for newly diagnosed? Maybe she’d like to do something like that to help her through these early days

All the best
Zoe


edmontonalberta
5 months ago

Hi everyone.

I could be wrong about this – but I doubt it…

When I place my computer mouse over a posters name I am able to click on it to get more information about that poster. Yet when I place my mouse over Anonymous – nothing occurs.

Methinks they deleted their account…


stumbler
5 months ago

@edmontonalberta , you are right. Rookie didn’t stay long with us and has removed himself from the Forum. 🙁

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