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  • AS and Intimacy
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Living with ankylosing spondylitis

AS and Intimacy

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avatar manuella26

manuella26

27/05/2020 at 16:41

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avatar manuella26

manuella26

Last activity on 19/07/2021 at 16:20

Joined in 2018


8 comments posted | 7 in the Living with ankylosing spondylitis group


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Hi everyone, I hope this isn't too "taboo" for our community, but I'm really looking for advice. I've had AS for about two years now and I've been in a relationship for about 8. My spouse is really understanding and supportive with my AS, but he's really afraid of being intimate together (afraid of hurting me, of starting a flare up, etc.). I guess what I'm wondering is how you all cope with this? How do you cope with lack of intimacy? Do your partners also feel like this? I'm at such a loss and I don't know what to do.

Manuella xx

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avatar Courtney_J

Courtney_J

Community manager
27/05/2020 at 17:22

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avatar Courtney_J

Courtney_J

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Last activity on 13/10/2022 at 16:47

Joined in 2020


1,279 comments posted | 21 in the Living with ankylosing spondylitis group

11 of their responses were helpful to members


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@manuella26 Hello manuella26, thank you for starting this discussion. Intimacy is an important part of life as a couple, and it's important that you both be comfortable communicating with each other. Let me tag some members who may be able to share their experience or advice with you.

Hello all, I hope you're doing well. How do you handle intimacy in your relationship? Have you experienced hesitancy with your partner? Can you share any experiences or advice with Manuella?

@Coling‍ @Missy2‍ @eileengreen‍ @Joduell‍ @saxon49‍ @SuziBloor‍ @DebiJP‍ @Jenpat‍ @Catblonde‍ @Suzief‍ @Shelldurrant‍ @Kelgirl76‍ @Dollydymchurch‍ @Becky5343‍ @Abuosman‍ @trefor‍ @mads8384‍ @hung.7‍ 

Take care,

Courtney

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Courtney_J, Community Manager, Carenity UK


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-05-27 17:22:51

avatar april007

april007

28/05/2020 at 18:05

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avatar april007

april007

Last activity on 20/10/2020 at 10:23

Joined in 2017


25 comments posted | 13 in the Living with ankylosing spondylitis group


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@manuella26 Hi manuella. I understand what you mean. Honestly haven't had any intimacy in my marriage for awhile either. Embarrassingly so. He never initiates anything, I'm sure he's unsure how to proceed being everything has changed, and he's really concerned about hurting or embarrassing me or himself. Probably should get back in the saddle.....


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-05-28 18:05:07

avatar neighbour

neighbour

28/05/2020 at 18:14

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avatar neighbour

neighbour

Last activity on 28/05/2020 at 18:10

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14 comments posted | 12 in the Living with ankylosing spondylitis group


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@manuella26 Hello, I don't know what your situation is, i.e. to what extent your spondylitis affects you, but I'm sure that behind your partner's "fear" may be a lack of communication. Talk to him and tell him that the situation doesn't suit you, reassure him, take initiatives to make your relationship as smooth as possible, but above all, talk to him. That's the way I would go about it, but maybe other people are going through a similar situation and will be able to give you other solutions. Chin up, everything will work out if you both want it. emoticon heart


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-05-28 18:14:47

avatar Cmad66

Cmad66

29/05/2020 at 21:02

avatar Cmad66

Cmad66

Last activity on 10/10/2024 at 18:22

Joined in 2015


5 comments posted | 3 in the Living with ankylosing spondylitis group


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Hi there my fiance who passed away on the 25th July 2019 had AS. We ended up not being intimate as he was in a lot of pain . 

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Cmad


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-05-29 21:02:49
avatar exit

Unregistered member

30/05/2020 at 01:08

Hi Ya'll

I have been a 'monk' since June 2005, just before my first heart attack. Prior to that I found making love very painful at times, I have A.S virtually all over my body and have had it since 2001. Flare ups? Nothing new., My lower back felt like electric shocks going through it. Since my first heart attack my wife says 'I would rather have you and no intimacy, than have intimacy and no you'. We have found that our love for each other has grown stronger in other ways. We don't even think about it now unless there is something 'fruity' on the telly?

You don't need to be sexually intimate to be. Oh! so very close to the one you love. Try it and see?


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-05-30 01:08:12

avatar april007

april007

03/06/2020 at 11:40

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avatar april007

april007

Last activity on 20/10/2020 at 10:23

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25 comments posted | 13 in the Living with ankylosing spondylitis group


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@richard0804 That is so true. Emotional intimacy is so important, being able to be yourself completely and share your inner-most secrets and thoughts. Thank you for your perspective, it's got me thinking. 


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-06-03 11:40:28
avatar exit

Unregistered member

05/06/2020 at 01:09

Hi April007

I trust you and your family are as well as can be expected? My wife Wendy and I are just about managing this blessed lockdown.

I'm glad I've started the 'old grey matter' going. A lot of people especially the young think that a relationship is all about sex. Well it's not. You can have such a satisfying relationship/marriage just being so close in mind and spirit. Please let me know the outcome of your thought process?

STAY SAFE 

Richard 


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-06-05 01:09:51

avatar lawrenceJr

lawrenceJr

08/06/2020 at 14:28

avatar lawrenceJr

lawrenceJr

Last activity on 23/07/2020 at 15:32

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9 comments posted | 9 in the Living with ankylosing spondylitis group


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Oops I hope this posts, I had a bit of an issue there:
@richard0804‍ This is very true. I'd almost argue that a relationship with relies more on emotions and less on the physical can be more rewarding and deeper. It's a true, deep connection.

@manuella26‍ I hope this has helped you a bit, there are other ways to be intimate with your husband than physical. 


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-06-08 14:28:06

avatar sASha!

sASha!

12/06/2020 at 16:45

avatar sASha!

sASha!

Last activity on 12/06/2020 at 16:37

Joined in 2020


3 comments posted | 3 in the Living with ankylosing spondylitis group


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I also have AS and the fatigue has clearly put a damper on any libido I had. I'd say I'm intimate with my husband maybe once a month and still I force myself because I don't feel like it at all even though at the same time I miss it...

I think my husband has a hard time with it but I do my best. I don't want to put my disease on anyone else so I grin and bear it. I understand how he feels because we're still young yet I have the libido of an octogenarian. 


AS and Intimacy https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/as-and-intimacy-3403 2020-06-12 16:45:08

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