Anonymous 22/12/17
Last reply 3 months ago
Forum for partners of MS sufferers

Hi,

I’m recently diagnosed (July 2017) and wife is doing her very best to support me. I think she is struggling with my diagnosis though. As a patient there are good support networks I can access but was wondering if there is a forum or group that she could access as a carer?
I think it would be very beneficial for her to be able to connect with people experiencing similar issues.

Many thanks,

Jason

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reddivine
3 months ago

I’ve been away from shift and only just read your post. My partner and I are c0-carers – me with MS, him with kidney disease.

Advice is here – https://www.carersuk.org/

Many if not all places will have a carers centre providing support for carers in such positions, there really a lot out there and its just a case of knowing where to access help. Theres also the MS society’s own forum which makes quite lively reading


kitty369
3 months ago

Hi Jason,

I was thinking exactly the same this week, my husband who is wonderful seems to be struggling a bit with โ€˜what to doโ€™ I was only diagnosed in May 2017.

He has said a few times, I would really like to talk to other partners.

He looked on the ms society website but I think it freaked him out a bit, will also watch this post for any further advice.

Kate


sciencegeek
3 months ago

This seems to be a common issue. Could our have a section on this site, or just start their own thread?

My partner is really struggling, and is still in denial (which can be awful for me, as he has said things like “You don’t really need help with (insert what I’ve asked him to do). You just can’t be bothered and you’re tyring to make my life difficult”. For the sake of our marriage, he really needs somewhere that he can meet and chat with other partners.


sciencegeek
3 months ago

@sarahshift – is this something that you could comment on?


stumbler
3 months ago

Partners probably prefer a certain amount of denial.

Then, if you could offer education and support, would it be a case of, “you can lead a horse to water, but you can’t make it drink”?

Just thinking out loud…….. ๐Ÿ˜•


sarahshift
3 months ago

Many carers and partners are members of Shift.ms and use the forum. We’d encourage people to use the site, they’re very welcome. You can search by ‘I know someone with MS’ to find people.

We’re planning to start doing curated chats on the stream. We could look at a planned chat for carers/partners to get involved with, share experiences and ask advice. This could lead on to people connecting and arranging to meet up.

We’re about to launch an MS Reporters series on relationships too.

Hope this helps?


sciencegeek
3 months ago

@stumbler – a certain amount, yes ๐Ÿ™‚

I still think that he could do with somewhere to rant and someone to talk to…


gbrmswife26
3 months ago

I have also been searching for a place to connect with carers in a similar poistion to myself. Yes, there are carers forums however they appear to mainly consist of carers whose partners who are a lot further along in their MS journey and required physical assistance. Those stories are helpful but a little overwhelming and difficult to connect with if your partner is still able to do pretty much everything on their own. I have not yet found a forum for new carers (my husband was diagnosed in 2015) where the concerns are more about providing emotional and mental wellness support.

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