janep 10/03/15
Last reply 3 years ago
Impact of MS in relationships

Hi Everyone,

I’m a shift community member and in my day job I’m a psychology researcher. I am currently involved in an application to the MS Society for a new research project aiming to develop an intervention to support couples where one partner has MS. As part of the application we’d like to show that we have had the input of members of the MS community so I wondered if I could get your opinions?

The project intends to conduct an online survey and interview adults with MS and their partners in order to identify the key issues couple are dealing with. We will then use this information, as well as input from a group of MSer and partner advisers, to develop some online tools. These new tools will then be tested in order to check they are useable and helpful and to collect support (or not) for a larger trial.

We’d gladly hear any thoughts on this proposed project but in particular we would like to ask:
– Do you feel that the impact of MS on relationships is an issue that is not currently given enough attention?
– Do you think people with MS and their partners would be interested in this?
– Would people with MS and their partners be likely to access such an online intervention together?
– Are there any particular topics that you think should be covered in the intervention?
– Do you foresee any problems?

At this stage we are simply seeking your general thoughts on the subject, not asking about your own relationships, but if you would feel more comfortable sending me a direct message rather than posting here then please feel free to email me on [email protected]. I will share the content of your comments with the project team and some quotes may be included in the grant application but your contributions will remain completely anonymous and confidential.

Many thanks for taking the time to read this,

Jane

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Anonymous
3 years ago

hi Jane @janep, as you guessed, even with a general questionnaire, you will touch very personal things. Maybe a multiple-choice questionnaire would be the most respectful.


stumbler
3 years ago

The impact of MS on a relationship is a big issue, which is often overlooked as both parties try to come to terms with the diagnosis. If this aspect were to be raised, it would be questionable whether either party would realise the importance of the issue.

As you are probably aware, one of the first reactions to a diagnosis is to try and release the partner from the relationship during a phase of self-pity. But, this is just one phase on a journey to acceptance. And, both partners will need to find their own way of accomplishing acceptance in their own way, in their own time.

It really would be a case of whether there’s “room” to introduce a method of stabilising/reinforcing the relationship, whilst both partners are trying to relate to the diagnosis. It’s almost like a Policeman approaching you following a car crash and asking to discuss your relationship – it just doesn’t seem appropriate or important at the time. Although it clearly is important.

This concept would have “to be sold” to the partners of a relationship. When we try and adopt a philosophy of “I have MS, MS doesn’t have me!”, the concept may escalate the MS into a too prominent position.

For my part, I have been dealing with this for 30 years this year (no anniversary cards please!). Yes, I tried to push my partner away following diagnosis, but we hung in there. MS as a subject, just isn’t discussed that much. MS is that unwelcome lodger that we tend to leave alone.

My partner is somewhat confused by my role on these forums. She doesn’t know where I amassed the information and the counselling skills. I’m not sure I do either!

The impact on the relationship is something that needs to be acknowledged so that the stresses associated with an unstable relationship can be avoided.

I’m going to stop now as I may be drifting into waffle mode. :wink


janep
3 years ago

Thanks for your comments both!
@ericg, we will certainly be playing close attention to the questions we ask as this is a difficult subject but we also want to make sure the questions reflect how people really feel which can be tricky with multiple choice. Rest assured though, we will be testing all stages of the project with a group of MSers and their partners before anything is sent out!
@stumbler, thanks John, insightful as ever! Part of the aim of the project is to look at its feasibility, not only in terms of the intervention but in terms of whether MSers and their partners would want to engage with it. I definitely take on board your comment about people not being ready and we’re intentionally not targeting just those newly diagnosed as a) they may feel they have enough on their plates and b) these issues are not limited to the post-diagnosis period.
Many thanks to you both for your help, I’ll keep you posted!
Jane


stumbler
3 years ago

Title of post changed from “Your opinions needed” to “Impact of MS in relationships”.


reddivine
3 years ago

You need to interview an “MS-er” and their partner seperately. They may have things to say, that they don’t say to their partner and also very acute observations.
the subjects of sex, death, children, work, being a carer will ALL come up and they will be tricky ones!


janep
3 years ago

Thank you @reddivine- very good point! Thank you for your input, Jane


krisp
3 years ago

I’m currently in thr push partner away phase and it’s been really helpful reading this to see its not just me.
It’s hard when you’ve got children too, I only have one, so I couldn’t cope with my other half leaving as she would likely take him too.
It’s not easy this and I’m not even diagnosed yet!


reddivine
3 years ago

Further thoughts:
Not sure an “online tool” is going to be much help. What couples often need is help with the nitty gritty and that need REAL people to talk to.

Stuff like counselling (as a couple or individually
Social care. Who cares for the carers?
Advice about sex, money, family. Housing! the right housing can make a TON of difference! The wrong can be a major stresser


jman
3 years ago

As @reddivine says.. So where do we start….

JMan, partner of reddivine..

In answer to your Questions.

1 :YES, with any long term condition, disability, Relationships, wether sexual or other are not often talked about, and rarely feature in a care plan.

2 Yes, I think it could be interesting and perhaps very useful.

3 Define and online intervention. I think any online research for something like this HAS to be linked with face to face, or direct interviews, data gathering case studies to fullfill its full potential.

4 Any problems. As with any condition or disability, physical and mental barriers may need to be overcome and this needs to be included as a wholistic approach from those that can provide help.

I’d recommend looking at the work of SHADA and the Outsider Trust as it might be of use.

http://shada.org.uk/wp2/

We’d gladly hear any thoughts on this proposed project but in particular we would like to ask:
– Do you feel that the impact of MS on relationships is an issue that is not currently given enough attention?
– Do you think people with MS and their partners would be interested in this?
– Would people with MS and their partners be likely to access such an online intervention together?
– Are there any particular topics that you think should be covered in the intervention?
– Do you foresee any problems?


graham100
3 years ago

Hmmmm. Very tricky. Not sure you would get the true facts. Married for a long time I’m sure in sickness & bla bla. You know what I mean. And a lot of people (plod on) making the best of it. And would not admit to there true feeling anyway.


jman
3 years ago

@janep I will send you an email and PM you

J


janep
3 years ago

Hi everyone, thank you so much for your feedback, plenty for us to be thinking about!
Part of the focus of our project is looking at the feasibility of offering these types of support and whether MSers and their partners will want to use them and what would work best. To respond to one of @jman‘s points, we will be collecting a huge amount of information in the process of developing the online intervention tools: from existing research in MS and other conditions; from a large survey of MSers and their partners (to gather enough information around the key ideas to feel confident that the ideas are fairly representative), as well as in-depth interviews with MSers and their partners to try and really understand the key issues and how best to try and respond to them.

We have now submitted our application so I will keep you posted on whether or not we are successful! Thank you again for all your input it’s been really helpful!

Jane

PS the application has been submitted but do please continue to add comments!

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