Your relationship stories

[Victoria-NRAS]

Hi all

We are in the process of a big rewrite of our booklet on relationships. To make the booklet feel more personal, we want to include real-life experiences, through anecdotes and quotes.

If you have something to say about being in a relationship when you have RA, please let us know. You can comment below, direct message me on here or email: [e-mail]

We want stories that portray a realistic experience of the highs and lows of being in a relationship when you or your partner have RA. For example:

- How RA may have affected plans you had as a couple before diagnosis

- If you had RA before your relationship started, how and when you told your partner that you have RA

- The impact of RA on your sex life

- To make the booklet more up-to-date, we want to include information on modern dating and RA, for example experiences with online dating and speed dating, so if anyone can share their story or are happy to be quoted about this, it would be really helpful.

- We want to make our booklet as inclusive as possible to all couples, so would be interested in featuring stories and quotes from those in the LGBTQ+ community, who we felt were under-represented in our original publication.

It would be great to include at least a first name to go with your quote or story, but we understand this is a very personal subject, so completely understand if you are happy to be quoted but would prefer to do so anonymously.

Unfortunately, I cannot guarantee that all quotes and stories will be used, but I will read all that are submitted to me and I very much appreciate all responses. Even if your quote is not included in the booklet, by submitting a part of your story to us, you are helping us to shape this important resource.

Many thanks as always

Victoria (NRAS Information Resource Manager)

[medway-lady]

I'm sorry but think this is fraught with danger how do you know the experience relayed is accurate or even true? its just one side of a story. I'm sure it could potentially help someone but what if someone followed well meaning advice and something went wrong and a marriage or relationship ended. How will you keep what could be sensitive information private and potentially publishing something as Data Protection is involved. This I think is best left to professionals not really well meaning but nether the less amateurs. What if somebody was identified ? I'm sure that the implications of what if have been discussed but really sex lives ??

[Hisue in reply to medway-lady]

Well said- "fraught with danger".

RA onset & diagnosis is frightening enough.... Rheumatologists need to be trained in referring patients to appropriate specialists and professionals for private consultation & treatment.

And most don't do this (in USA, my experience).

[AgedCrone in reply to medway-lady]

I agree..absolute hot potato …..best left to a personal consultation……amateur relationship counselling can go badly wrong.

[Victoria-NRAS Partner Moderator NRAS in reply to AgedCrone]

Hi

Please see my message below. This is a booklet we currently have but are looking to update. It was written by a qualified psychotherapeutic counsellor (who also has RA), alongside experienced NRAS staff members, and we are all working on the update. As we often do with our booklets, we would like to feature some quotes from people with RA. We are not asking those people to give advice, only share their experience.

[Deeb1764]

it does say can be anonymous so it’s fine to give a view of your relationship if happy to do so. If You talk to your partner then you would know how you have adapted your relationship to work with RA surely?

It might be simple advice as not talking RA all the time or making sure you both do positive things on the good days and how they support you on a bad day.

[J1707- in reply to Deeb1764]

I agree D. There is so little help available out there for our partners . Other diseases have relationship help available. I know RA has a big impact on my relationship with my hubby. The hobbies we both shared and socialising had impacted his life too . All part of our relationship.

[Victoria-NRAS Partner Moderator NRAS in reply to J1707-]

Hi. I completely agree. One of the things we discuss in the booklet is the impact that RA has on partners. Though they do not experience the symptoms, it will impact their life. They may find themselves fulfilling the role of carer in some situations, they may not follow a 'dream' because it was something you had both expected to do together and now you can't. This could cause resentment in them, which they might feel really guilty about.

[Janeellen]

My advice would be to partners of patients with RA is to be patient and gain as much information about the disease as possible.Partners need to be aware RA is unpredictable. It has no concept of dates and times. Plans made may need to be changed or even cancelled because of flare ups. Partners need to accept it's not the sufferers fault if things can't/don't go as planned due to RA.

[Happy5]

I emailed you Victoria 😊

[Victoria-NRAS Partner Moderator NRAS]

Hi all

Thank you for your comments so far. Regarding the word 'advice' this is not what I am asking for. As you say, advice is something best left to professionals. I am only asking for personal experiences. I will also make sure that it is framed that way in the final edit, so if you say 'My advice is...' I might ask you if I can change that to 'In my experience...' or 'My experience has been...'

As I said, we are happy for comments to be anonymous, but if you were to send me a personal story that has identifiable features in it, for example, if you said the age and venue where you met your partner, it is possible that they would read a quote and know it is about your relationship. In this instance, it would be best to either remove that identifiable information or speak to your partner and make them aware that it's going in there.

Comments can of course be much more general. For example, someone could say 'My partner sometimes tries to help me, but it can feel suffocating if they do this too often, so we've had to talk about when I need help and when I would rather do something myself, even if I am struggling.' This sort of comment could come from anyone.

Of course, there is no way to verify that when we quote someone, they are telling the truth, but often, their story will ring true with others and could help people even if made up. I think it's likely that the majority of people submitting comments would be doing so honestly anyway.

The booklet will not only be made up of personal stories. The principal author is a qualified psychotherapeutic counsellor, who also has RA herself, and she will be working with experienced NRAS staff and an external health editor.

Comments do not need to be just about sex, though that is one aspect the booklet covers. Again, this can be general comments, for example, 'Some sexual positions can be painful, but I find using pillows to prop myself up and use of painkillers can help with this'. Something like this would not be identifiable. I know not everyone will want to talk about something so private, but some people are happy to be open about this, and it can help others.

I hope this helps clear up some of the concerns raised.

[medway-lady]

I’m glad that you’ve now clarified the original post in part but how will you verify if information provided has been qualified by consent with any third party? And I understand what your trying to achieve however is RA any different from any other disease or condition that impacts on daily life? I’d say you could also look for the positive RA experiences which your post does not seem to want, it can be treated and once in remission life goes on. It has never really impacted on my life, but CKD has so I’d say be encouraging, be optimistic and life and relationships are what you make them not because of a disease or condition but despite it.

Can I also just add that there is nothing for partners is not true here they are encouraged to go to appointments and very welcome at NRAS meetings. And a diagnosis of RA now with all the medications available is not how it was even 20 years ago when I was first diagnosed. It not the same for all but for the majority there is every chance they like me will continue to have a career, go on holiday etc we just take the meds and forget it except for the regular blood tests and hospital appointments. I’ve never needed any special consideration for RA it is simply something I have like blue eyes.

[Victoria-NRAS Partner Moderator NRAS in reply to medway-lady]

Thank you for your response. We will work to ensure that no identifiable information is given in quotes. We include quotes in a lot of our booklets, so this is something we are very familiar with and I promise we will give this due care and attention.

Positive stories are completely welcome and are actually really great, because they give people a lot of hope. As I said in the post, we want to represent the 'highs and lows'. 😊

[medway-lady in reply to Victoria-NRAS]

Great I’ll pm you I’ve done a few odd things in the past twenty years, RA is not life limiting it’s about looking out not in. All things including our ages impact on relationships so in my view, relationships change regardless of RA which in some cases might be an excuse not a reason for change.