Trying to understand..

Daffodil39

I'm sorry to bother you all..
My partner suffers from Reactive Arthritis and has done since a streptococcal throat infection in 2010.
Throughout our relationship, it has become apparent that I do not understand what he goes through on a day to day basis.. I really do try to understand but as I do not suffer from it I find it difficult.. he is now at the point where he does not think he will be able to continue to work but he doesn't want to become a burden or put any pressure on our family or our relationship. My solution was to work extra hours to lessen the financial worries but he says it is affecting his sense of identity and that I should understand that me working extra hours won't help that.
He is getting closer to calling off the relationship because he feels that I don't understand what he goes through every single day.

All I want to ask is.. what can I do to help? I'm terrified of losing my relationship with the man who I love more than I have ever loved in my entire life but I don't know how to support him. I really do try, but I don't think it is enough and that's terrifying. I want him to feel supported and loved as much as he is and for him to realise that I will do anything I can possibly do to help his symptoms.

If you could write a letter to someone so that they can begin to understand how arthritis affects every part of your life, what would you write? What can I do to help?

I'm sorry if this sounds garbled, I'm absolutely desperate.. I don't want the Love Of My Life to feel alone but I need to know how to support and help him the very best way that I can.

Thankyou for listening.

[Deleted User]

Dear daffodil39,

What a heart rending story, I really feel for both of you. Reactive arthritis often goes away completely but I didn’t think it would last for 8 years. Does your partner see a rheumatologist? If not maybe he could request an appt from his gp.

This is our booklet on reactive arthritis.

https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

It helped me a lot to try to explain my daily life to a use ‘ The spoon theory' it was devised by a girl with lupus to help her friend understand how it feels. We now refer to 'spoons' as a shortcut on what kind of day I’m having. Have a read and see if it helps you.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

To be honest it sounds to me like you are doing your best to help your partner, it’s hard to cope with the pain, exhaustion, frustration and general awfullness all the time and maybe your partner needs support to go to his doctors and tell them he needs help.

Perhaps you should show him your post so he sees how much you care and want to help

Please let us know how you get on,

Take care
Yvonne x

dreamdaisy

Hello Daffodil, it's lovely to meet you and I am sorry you have had to find us. I found your post quite heart-rending because as the non-sufferer it is a difficult thing to understand. Reactive Arthritis is one of the rarer kinds and usually has the decency to clear up - the fact that your partner's has continued leads me to wonder if it is one of the other kinds of auto-immune inflammatory arthritis?

I have a creaky foot in both camps; I began with an auto-immune arthritis in 1997 (psoriatic) and that has led to osteoarthritis (diagnosed in 2011). got to go. back later. DD

Daffodil39

Thankyou so much for your replies..
He sees his rheumatologist regularly and takes Sulfasalazine daily. It is described as Undifferentiated Inflammatory Arthritis on his notes and the effects are ranged from extreme fatigue to every 'itis' going..
It's just heartbreaking. He constantly tells me that I don't understand and that until I do, we cannot carry on.. I'm absolutely desperate. But I don't know how to understand what I don't experience.
I'm a nurse and I've read so many journals and articles but they don't describe the support that someone needs, they just discuss the medical support that is offered at different stages.
I've always thought of myself as being understanding and a good listener but I don't know what to do or what to say, I sound patronising when I say that I understand and it sounds offensive when I say that I'm trying my best.
Sorry for rambling, I'm not sure what I want from this.. maybe, as suggested, I should show him this and try to make him realise that I'm here through thick and thin.. whatever happens.
Thankyou for listening ❤

mermaid

Hi Daffodil,

I found your post so moving and caring and agree maybe you should show it to your partner.

It is true that if you haven't walked in someone's shoes it isn't possible to totally understand what they go through but the will to understand is everything.

It sounds to me as if your partner could be quite depressed and maybe some counselling could help? Feeling alone and that no-one understands can be common, also feeling inadequate causes guilty feelings and resentment. Talking can really help in such situations, which are nobody's fault.

Maybe a chat with the GP? It affects you both and being a carer as well as a loving partner can be tough.

Lots of luck to you both xx

dreamdaisy

Sorry about breaking off, I have a close friend in hospital with pneumonia and she was able to ring me.

Right, if sulph has not cut the mustard I am surprised that the rheumatologist has not suggested anything else. It is obvious that the disease is still active (the correct medication suppresses disease activity, it does not cure it) but it is unusual for reactive to carry on for so long. My thinking is running along the lines that he has some form of auto-immune inflammatory disease but I am not a doc and cannot diagnose. As an 'expert' patient, however, who has tried nearly every drug under the rheumatic sun, to be restricted to just sulph is nonsense.

My husband does not understand but that has not stopped him loving me or me loving him. He has witnessed every decline, I know he is frustrated by the fact he cannot make me better and I have to reassure him that everything he does to help does help: it does nothing to reduce my pain or fatigue but nothing will. Of course you cannot understand, it's not until one experiences something that understanding comes and on that front I hope you remain in blissful ignorance.

It sounds as though your chap is depressed and no wonder, to feel ill on a continued basis, with nothing being done by the specialist to improve the situation is demoralising and depressing. In 2011 I plunged into depression when my OA was diagnosed and to this day I am still taking a low daily dose of an snti-depressant. Being stronger mentally helps me cope with things better, it also helps that I am fully reconciled to the fact there is no cure and that things will only get worse. So what? That doesn't mean I can't laugh, cannot enjoy things, make happy memories, see friends (so what if I am in bed when they come round? Who says you have to be in an arm chair to entertain?) My life is compromised but that doesn't not mean I cannot make the best of it. My husband cannot reduce the pain but he certainly alleviates it by doing the practical things when I can't. DD

Philo

Hi Daffodil, sorry to hear about your situation. I think that what mermaid said may well be correct.

It can be very hard for somebody to accept the sort of lifestyle changes that go along with long-term illness. In my own case, the gradual degeneration of my physical abilities has been known to lead to all sorts of emotional problems; notably anger & depression. Unhappily this does get taken out on those closest to us. The issue may not be that you don't understand how your partner feels, so much as he is having difficulty dealing with those feelings. Unhappily, I know from my own case that it is not easy to enter into meaningful dialogue with somebody in this situation ("Of course I'm depressed! You would be too if you were me!"). However, once it is acknowledged, things do get easier, simply because it's out in the open & you can actually talk to each other about it.

I hope things work out for you.

JoeB

Is there anyone who has not experienced pain at some point in their life. Part of the problem with arthritis is that, without effective management, pain becomes a chronic issue and one that is rather debilitating to put it mildly.

Pain changes people and it does not sound to me, from what you said, as if his reactive arthritis is particularly well controlled. Among other things if his pain were better controlled he may be able to continue working that in turn may assist him in maintaining a positive self image and so on ...

It might be worth encouraging him to seek a review of his condition from whoever prescribes for his reactive arthropathy in the first instance. Appointments with Consultant Rheumatologists can usually be brought forward if one is flexible to day and time or prepared to accept an appointment at short notice.

Should he not see a Rheumatologist then I appreciate that GP appointments (at least NHS ones) can involve a wait of several weeks, in which case the sooner he makes one the sooner he can obtain effective pain relief.

Obviously if no one is prescribing for him at all then it would be in his interests to seek some pain management.

That is my contribution and I hope it is of some help.

Arthur