Anyone struggling with partner understanding condition?

Callo

Hi all,
This is my first post, I just signed up to the forum, so hi everyone! I‘ve lived with arthritis for half my life now, I got it when I was 18. I really struggled at first to tell anyone, I was embarrassed by it.
Anyhow, fast forward 17 years. I am generally doing OK, I exercise loads, every day body weight exercises, cycling to work, moving as much as I can. It keeps the pain at bay. I take MTX as the metoject pen every Friday, I switched to it from tablets two months ago, 25mg. I also take Hydroxychloroquine every day, 200mg.
I‘ve been with my current partner for 2 years now. He knows I have rheumatoid arthritis, he has seen the scans (and scars) of my right wrist replacement, and he knows I can‘t do things others can.
Sometimes, though, it feels like he doesn‘t know at all. Yesterday when we went to bed, he said „I hope you sleep alright tonight, otherwise you‘ll be in a bad mood all day“. I felt really offended by that. It was the night I had to take my injection, and I had told him about the side effects before. I felt sick after the injection for about an hour. I slept very badly, he kept moving at night, so I moved to the couch eventually.
Long story short, I don‘t really know what to do. I don‘t want to come across as whining about arthritis all the time, yet I also need him to understand that this is quite a serious condition with serious side effects of the medication, and I don‘t feel like dancing every day, especially after MTX. I feel depressed and irritable, I am super exhausted, and I just have no patience.
How do you deal with your partner and trying to get them to understand? He has never had any health issues, apart from a bad back from time to time.
Any comments appreciated!
Many thanks,
Caroline

[Deleted User]

Hi Callo,

It’s lovely to meet you and to hear you are doing so well. Your partner doesn’t understand how arthritis affects you and possibly because he sees you looking well and active he 'forgets' this is a disease that doesn’t go away. He has seen your wrist and maybe thinks the replacement is a cure?

How to help, you will have to choose what you think will help him most. You could show him the booklet on here about rheumatoid arthritis, here’s the link

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

On the website there are videos from people with RA which might be useful.

There are 2 articles online, one is 'The spoon theory'
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
the other 'The gorilla in the house' http://batsgirl.blogspot.com/2008/04/gorilla-in-your-house.html

I hope these give you some thoughts on how to proceed, let us know how it goes

Take care

Yvonne x

stickywicket

Hi Caroline and welcome.

First of all I must congratulate you on how well you are dealing with your RA – taking the meds, exercising regularly, not wishing to moan on about it but also recognising the need for your nearest and dearest to be on board with it all.

I have RA too. Diagnosed at 15 but that was nearly 60 years ago when modern DMARDS weren't on offer. Now that I, too, am on methotrexate (oral) and hydroxy things are much better for me.

I think a problem for you (and I don't mean this at all unkindly) is that, thanks to your attitude and the DMARDS, you don't really look or act 'ill'. Plus, your partner is male :roll: I've been married to Mr SW for over 50 years and I still have to explain, and explain, and explain the same things frequently. No, I can't do that today but maybe tomorrow. No I don't need to see the doc and 'get fixed'. (Men always want us fixed, especially the healthy, sporty ones like yours and mine) Yes, I'm tired but it's just a 'post-meth' day. It'll pass. I'm grumpy because it hurts!

I've yet to find a 'cure' for this attitude but some things that might help would be to show him the Spoon Theory which Mod Yvonne suggested and
https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

It's quite a knack to master how to inform without coming across as moaning especially when we have to do it several times. Sometimes, when there's a bit of a build up of misunderstanding and annoyance, I find it useful to have a nice, relaxed meal, with wine (Don't make it on a methotrexate day ) where things can be talked through. On here, we do acknowledge that arthritis affects everyone in a household albeit in different ways. Maybe he has things he'd like to say too but is a bit wary of upsetting you. Personally, I don't take offence when my husband says something which shows he's being clueless and careless because I know it's very hard to understand the implications of someone else's virtually invisible illness / disease but I do get annoyed sometimes and I think, in the situation you described, I'd tell him why.

There's some useful stuff here about relationships and communication. I hope some of it helps.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-well-being/

dreamdaisy

1. He's a bloke.

2. He's a healthy bloke.

3. He's a young, healthy bloke.

4. He's a bloke.

It is now unusual for people to come into contact with someone who is living with an incurable disease. The culture of today is fall ill, see a doc, take pills and get cured, a culture reinforced with ads stressing that illness is a merely a temporary setback (what aching back? what painful knee?) Or you think you're ill, muck about with tincture of pansy with dandelion foam, cuddle crystals (or even better be massaged with them) and get 'cured' of nothing. We're stuffed on all fronts, we have an incurable disease, vile meds which merely control disease activity, completely beyond the non-existent help of the humble pansy. People think they know what arthritis is: their grans have it, they walk with sticks and for some grans it goes away. (They tend to be the self-diagnosed kind of gran). Oh, and it only comes in two kinds, RA and OA and they're just arthritis.

Yes, arthritis is a very common condition but that is osteoarthritis, not one of the many auto-immune kinds which are a very different kettle of fish. Arthritis changes our physical and emotional lives, it affects not only us but those around us too. It makes us unreliable employees, it can make us socially unreliable too. Coping with it as well as you are could also be working against you as he will think that if you can be like that sometimes why not all the time? You know why not, I know why not; educate him about the disease, how it affects us and how it is predictable in its unpredictability.

My husband has responded by modifying his behaviour to match mine: when I'm brighter we go out and about, when I'm not he's quiet with me, keeping me company and making endless cups of tea but our relationship is thirty years old. When I say things are rough he knows to step up his contributions to household management but I don't go on all the time. I am always tired, always in pain, have been for years and will never not be but so what? It is what it is, it will do what it will do, neither of us has any control over the disease but we can control how we deal with it. My computer needs recharging and so do I: one of us will successful in that quest. DD

Callo

Thanks all! That's been very uplifting, I appreciate your help.

I broached the subject this morning over breakfast. He was feeling really exhausted from having ridden his bike and having done almost a half marathon (I 'only' did 7k, something I would have only dreamed of a few years ago, so yay for remission!). I seized the moment of his weakness...
I explained the spoon theory to him using spoons, of course. His reaction was quite extraordinary. It was of almost complete shock, when he got to lunch and only had four spoons left for the rest of the day, because he hadn't be careful with how he spend the first few. "But what about everything else I still want to do?". I think that's when it sank in that you simply can't do what you want to do, not if you want to pay for it later (or just can't). He said he can't imagine what it's like to live with a chronic condition, and that he would be depressed all the time. I think he is starting to take it more seriously, but like you said, he will need reminding a lot, must really be a man thing!

Anyway, good luck to all of us, and I hope to see you in a few more chats soon!

(Feeling MUCH better today, now that the injection has worn off)

dreamdaisy

What a brilliant but simple idea to allocate real spoons! I've made the elementary error of assuming that because my Bloke is of reasonable intelligence he would get it without actual props. Rookie error, DD, thanks Callo!

PS. In future, if he needs a reminder, leave a few teaspoons on his bedside table, or in the bathroom, or next to the kettle . . . .