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Original poster

Frustrated life has stopped

20 replies

FirmBlueWasp · 30/03/2025 16:25

My DH (50) has rheumatoid arthritis, and I understand he's in pain, but at 45 I feel like my life has stopped. We have 2 children (18,20) 1 lives at home other is about to leave to go to university. Since he has been diagnosed and is on medication, our whole lives have changed. The kids feels lije they can't do anything social with him anymore. I feel alone, we don't go or do anything together anymore because he's always in pain. He's doesn't show any affection towards me not even a cuddle. The last time we had sex was was nearly 8 months ago. Everytime I try to talk to him, he gets angry, and says so your blaming me for everything. I don't know what to do.

OP posts:
MEFibroHell · 30/03/2025 16:50

Try to find some empathy maybe?
Its shit enough to be in constant daily pain, and have to accept your own life is over and your dreams are no longer a possibility, without someone who pledged to love you in sickness and in health trying to discuss how they feel their life is over.

I’d maybe suggest joint counselling, or leaving.
He can’t help not being able to go anywhere or do anything, and feeling pressured, because it’s affecting you, is bound to make him angry and defensive.

What is it exactly you expect him to do?

My life has been over for 9 years, hit at age 43, no social life, always in pain, no energy. I’ve missed out on being able to do normal family things when my DC were growing up, they were in primary school, but the thing that makes this painful existence more miserable is the complete lack of understanding from family and friends.

Balloonney · 30/03/2025 16:54

I can see why you feel frustrated, life should be getting simpler now your children are adults and I'm sure you had all sorts of plans in mind of how life would be, but unfortunately it doesn't always work out that way. RA is absurdly painful, and I'm sure it's a lot to come to terms with for him and for you with unfortunately no real fix. If you have friends and hobbies I'd try and enrich your life with these and you'll probably feel more energised and willing to support your husband and come to terms with the fact life won't be as you planned.

lizzyBennet08 · 30/03/2025 18:07

Honestly it’s crap for your husband but you only get one life and you should life it how you want to. What I mean by that is just because he can’t go out and do things, it doesn’t mean you can’t. I’d join groups and find hobbies and new friends to find joy in life again.
its awful for him but he is the one who is ill, not you.

DenholmElliot11 · 30/03/2025 18:41

Agree with a PP you need your girlfriends sometimes. We simply can’t get all our needs met by one individual man.

Sminty2 · 30/03/2025 18:46

I’m sorry you are both going through this, it’s really difficult. I’ve had RA for 12 years and getting the right treatment, and no pain takes a long time for most people.

A lucky few will get the right drugs, that really work for them first time but for most of us, it’s trial and error. Each drug needs about 6 months minimum to see if it is effective, so it’s a slow and difficult process.

However, if he’s still in pain then he needs to be more proactive and demand better pain relief, you have to push, but RA isn’t the end. It’s more of a semi colon until the treatment is found. Be that DMARDs or biologics.

He can help himself by taking warm baths, resting before and after big days out, managing his expectations as well.

It’s an adjustment for life but life is definitely still possible. There are a few really good help sites like Versus Arthritis which have a lot of information on.

Mostly it’s about staying as positive as he can, and pacing himself. Pushing for better pain management and not just giving up.

I won’t lie, it’s a horrible disease but there is hope and some fantastic medicine out there. It just takes time, and patience which is tough when we all want an instant miracle x

OiBonita · 30/03/2025 18:51

Don’t forget that RA causes huge inflammation throughout the body and depression often goes hand in hand with the other symptoms. Being in constant pain, the exhaustion and just having to come to terms with the fact that you have this horrible disease is enough in itself.

However, that doesn’t take away from how you’re feeling and the affect on the whole family, but it sounds like he’s in too much pain and discomfort to see anything at the moment and just feels under attack. Sounds like he needs to talk with his Rheumatologist too and let them know how much pain he’s still in.

PrincessofWells · 30/03/2025 18:52

Find someone else to satisfy those needs outside the marriage or leave.

AnonAnonmystery · 30/03/2025 20:16

@FirmBlueWasp I am sorry you are all going through this at the moment. I think it’s a big adjustment for everyone and in a years time, your husbands RA may be more under control and normal.
However for now you need to understand that it’s not your husbands choice to be sick and in pain, he deserves support and I think you need to lead by example and have inclusive families activities - your husband prob can’t go out much so why not do a family movie night at home? Family takeaway of husband can’t go to the restaurant? Just small positive steps. But if you feel you can’t do this then don’t, leave but I think you should try. There are also groups that support carers as well. I am sure you feel a bit isolated arm and so does your DH. Do you still love him? You need to ask yourself these questions.

Original poster
FirmBlueWasp · 30/03/2025 20:18

MEFibroHell · 30/03/2025 16:50

Try to find some empathy maybe?
Its shit enough to be in constant daily pain, and have to accept your own life is over and your dreams are no longer a possibility, without someone who pledged to love you in sickness and in health trying to discuss how they feel their life is over.

I’d maybe suggest joint counselling, or leaving.
He can’t help not being able to go anywhere or do anything, and feeling pressured, because it’s affecting you, is bound to make him angry and defensive.

What is it exactly you expect him to do?

My life has been over for 9 years, hit at age 43, no social life, always in pain, no energy. I’ve missed out on being able to do normal family things when my DC were growing up, they were in primary school, but the thing that makes this painful existence more miserable is the complete lack of understanding from family and friends.

Thanks for your reply, but it's not that simple, he doesn't talk to me, he doesn't tell me how he's feeling or hurting. He won't even let me attend hospital appointment.

OP posts:
AnonAnonmystery · 30/03/2025 20:20

@FirmBlueWasp i think your husband has closed himself off as he probably feels his illness is a burden to you and he must be angry at why this has happened to him. I hope he gets some counselling. I appreciate your position. Your relationship sounds like it’s changed a great deal. I get you miss the love.

Rockdaylia44 · 30/03/2025 20:22

PrincessofWells · 30/03/2025 18:52

Find someone else to satisfy those needs outside the marriage or leave.

Ppl suggesting leave him..😡What happened to in sickness and In health?
if it was a female In pain 24.7 and husband moaning you would all slate him

Original poster
FirmBlueWasp · 30/03/2025 20:26

Just wanted to put out there, I don't want to leave him I love him. I just dont know how to deal with my situation. It's hard to talk to him.

OP posts:
AnonAnonmystery · 30/03/2025 20:29

FirmBlueWasp · 30/03/2025 20:26

Just wanted to put out there, I don't want to leave him I love him. I just dont know how to deal with my situation. It's hard to talk to him.

When there is love, there is always a way @FirmBlueWasp
How is he with you if you initiate holding hands and cuddling … something to just let him know you are there? It’s hell watching someone you love go through such a painful life change :(

Original poster
FirmBlueWasp · 30/03/2025 20:32

AnonAnonmystery · 30/03/2025 20:29

When there is love, there is always a way @FirmBlueWasp
How is he with you if you initiate holding hands and cuddling … something to just let him know you are there? It’s hell watching someone you love go through such a painful life change :(

Show quote history

I agree, he won't hold my hand as I understand his hands are painful, which I do understand. I'm just frustrated he won't talk to me, or go to any appointments with him. I feel he's not telling me everything. He's on medication which he does say helps, he's always falling asleep even at work, his boss is understanding. We both work all week, just would like to do something small at the weekend.

OP posts:
Sminty2 · 30/03/2025 20:34

FirmBlueWasp · 30/03/2025 20:18

Thanks for your reply, but it's not that simple, he doesn't talk to me, he doesn't tell me how he's feeling or hurting. He won't even let me attend hospital appointment.

Show quote history

That must be very tough. He’s obviously struggling with the diagnosis. There are some good resources here that helped my husband when I was diagnosed.
https://nras.org.uk/resource/emotions-relationships-and-coping-with-ra/

It’s very easy to lock himself away and wallow in fear, it’s very tempting when you get diagnosed but it really won’t help him or you.

I probably sound a bit harsh but I’m being honest, as an RA patient. I can understand how awful he feels and also how much it hurts you and your family to see this.

I’d suggest joining the support group and talking with others in your situation.

Ultimately he has to come to terms with it and that would be much easier with a loving family, but if he’s pushing you all away, you can’t help him if he refuses to be helped.

Do what is best for you x

Emotions, relationships and coping with RA | NRAS | Wellbeing and RA

Dealing with relationships and emotions are important and you can find information on working with those around you

https://nras.org.uk/resource/emotions-relationships-and-coping-with-ra/

Randomer27 · 30/03/2025 20:36

MEFibroHell · 30/03/2025 16:50

Try to find some empathy maybe?
Its shit enough to be in constant daily pain, and have to accept your own life is over and your dreams are no longer a possibility, without someone who pledged to love you in sickness and in health trying to discuss how they feel their life is over.

I’d maybe suggest joint counselling, or leaving.
He can’t help not being able to go anywhere or do anything, and feeling pressured, because it’s affecting you, is bound to make him angry and defensive.

What is it exactly you expect him to do?

My life has been over for 9 years, hit at age 43, no social life, always in pain, no energy. I’ve missed out on being able to do normal family things when my DC were growing up, they were in primary school, but the thing that makes this painful existence more miserable is the complete lack of understanding from family and friends.

You read this, and your answer is that?

  1. The kids feels like they can't do anything social with him anymore.
  2. I feel alone,
  3. we don't go or do anything together anymore.
  4. He's doesn't show any affection towards me not even a cuddle.
  5. The last time we had sex was was nearly 8 months ago.
  6. Everytime I try to talk to him, he gets angry, and says so your blaming me for everything.

Please don’t try to justify treating people shabbily. Don’t demand that she subjugate her life to his illness - and lastly if you are choosing to start on the vows, remember that the ill person also promised to love, honour and cherish during sickness too. Or did you think the vows were just something with which to lecture others?

PrincessofWells · 31/03/2025 09:49

Rockdaylia44 · 30/03/2025 20:22

Ppl suggesting leave him..😡What happened to in sickness and In health?
if it was a female In pain 24.7 and husband moaning you would all slate him

Show quote history

Op can only be responsible for herself and her emotions. It's up to her partner to deal with his.
There's a lot of ways of remaining intimate where one person has a disability, the fact her partner appears to care only for himself and his disability and nothing for her needs and wants says it all really, doesn't it?

marmaladeandpeanutbutter · 31/03/2025 10:15

I think you have to accept him how he now is, but at the same time think about how you can build a life for yourself which doesn’t involve doing things together.

Maybe go on a trip with the boys, for a start, or arrange things with them occasionally. Visit friends. Visit relatives. Invite people to you. Get some counselling, if you can afford it. Do you work? If not, consider going back to work, even if part time.

5128gap · 31/03/2025 11:34

MEFibroHell · 30/03/2025 16:50

Try to find some empathy maybe?
Its shit enough to be in constant daily pain, and have to accept your own life is over and your dreams are no longer a possibility, without someone who pledged to love you in sickness and in health trying to discuss how they feel their life is over.

I’d maybe suggest joint counselling, or leaving.
He can’t help not being able to go anywhere or do anything, and feeling pressured, because it’s affecting you, is bound to make him angry and defensive.

What is it exactly you expect him to do?

My life has been over for 9 years, hit at age 43, no social life, always in pain, no energy. I’ve missed out on being able to do normal family things when my DC were growing up, they were in primary school, but the thing that makes this painful existence more miserable is the complete lack of understanding from family and friends.

This is a very unfair response. How about you show some empathy for the OP? Yes it's horrendous to be hit with a long term health condition that's causes great pain and restricts your life. No one would suggest otherwise. But that doesn't mean the partner of the person doesn't suffer too. The OP is potentially looking at a future where she is unable to socialise with her husband, have sex or affection, and will no doubt have to take on increasing amounts of the labour that would have been shared, possibly also care duties in time. All that, till death do them part. That's a pretty bleak outlook at just 45.

Disabling health conditions are an awful blow within a marriage, and it's really unfair not to recognise the impact on the well partner. Even worse to shame them with their wedding vows for a perfectly natural dissatisfaction with their own lives.

Laundereddelrey · 31/03/2025 12:51

I think there is a balance to be struck here. A compromise between your DH’s very real daily struggles, his need to make significant adjustments to his life and the daily pain he endures but equally there is a part coming in his side too that he needs to deal with alone.

Lots of people go through the world with enormous struggles and no doubt your husband’s struggle is new and is significant but he does not get a licence to behave in any which ways which will do enormous damage to his family.

I think showing empathy and compassion but with accountability for behaviours and boundaries whereby you still live your life and don’t enable poor behaviour is the best you can do here.

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