Insensitive other half

[Hevsie]

Does anyone have any tips on how to cope with an insensitive partner?
Mine is what can only be described as a 'tough nut'. He believes in working through pain, and that this can only make you stronger. A good example of this is, several years ago now, I had a major operation on my shoulder. He made me help move 150 bales of hay off a field one week after the op because it would "make me stronger".
When I was diagnosed with HMS, my occupational therapist asked him to come in for an appoitment, where she explained that this theory does not work for someone with my condition. But the info doesn't seem to have stuck with him.
I've had a bad week with my joints, and wanted some help with mucking out the horses, as he has been on holiday with the christmas period. He completely refused to help, basically saying that there was nothing wrong with me, and that most of it is in my mind.
I eventually cried out that he wouldn't say that if I had a 12 inch gash down my leg - it's just that he can't see the evidence of the pain.
Our relationship is at an all time low.
How do I get through to him that my pain is real, when even the experts can't?
Sorry for such a rambling post. And sorry if this is the wrong place to put it - but I feel so helpless at the moment.

[LianneS]

Thats such a shame Hevsie... Im really lucky in that my hubby is great, says I moan sometimes but only says that jokingly and not when Im feeling low..
The working through pain is NOT good for people with HMS or people recovering from surgery, yes you need to keep as mobile as possible but you could so easily make it all worse. You need a balance.

Try writing him a letter,

http://www.hypermobility.org/family.php
This link is on this site for where someone has written a really good example of one. You could use it or write your own. I did this for my hubby, not because he was horrible but because I thought it would be a good way of telling him my feelings, just so he was aware.

You could also print out some info from this site about the pain that people suffer with this hidden illness.

I hope some of this helps
Keep us informed

Lianne

[Hevsie]

That is fantastic.
Made me cry reading it!
Thank you

[Mari]

I'm sorry your partner has this attitude, Hevsie. Let him know that you are already being strong and brave, just living with pain all the time. Tell him he isn't aware every time you hurt, because you don't give him a running commentary. Tell him you think you'd be better off taking advice from the medical professionals, as well as your own experience.

I'm not sure it will do any good though - as you said, he won't listen to the professionals. It must be tough for you to manage the condition when he is undermining you. We know how it feels when you're undermined by the doctors, but I'm fortunate in that I have a supportive husband and family, and that gives me strength.

Sending you strength too. :fight:

Mari

[Flora]

sorry your partner is not helpful. I'm lucky that mine is cool as long as he is not feeling too fed up. He hurt his back a couple of months ago, and took a week off work. When I mentioned last week that my lower back was hurting, as it always does he then assumed a martyred expression and said "Ah yes, but when I did my back in I couldn't move for a week, yours isn't that bad" :twisted: He did realise that that may not have been the most tactful thing to say when he saw my face.....
What helped for me was to show him the leaflets my rheumatologist gave me, and just be honest with how much trouble this stupid flipping body gives me.
Keeping my fingers crossed for you that things improve

[Hayley]

Hevsie, sorry to hear that your partner is not as supportive as he could be, at least you know you can come here and moan to us lot because we're all feeling the same! My husband is amazingly supportive of my illness and pains (despite being 10 years younger than me).

Here's a similar link to that which Lianne posted, just scrol down the page for info. Hope it helps!

http://www.myfibrosite.com/users/dayna/support.html

Hayley

[nonyanomemory]

Hi Hevsie, on a practical level - have you thought about referral to a pain management programme, the reason I say this is that on the one I attended, part of the programme was that partner's attended two full morning sessions. This type of thing for some of the partner's of those in pain was invaluable as they realised that because they were in essence just wanting the pain to go away they were in actual fact making things worse. Apart from anything else you don't have to do anything that you don't want to and no-one should have the power over you to make you feel you don't have choices. I don't know how you actually managed to lift the straw bales so soon after surgery and frankly I was shocked to read this. I wish that in all honesty I could sit down and talk some sense into him and hope that all he wants is for you to be strong and better to explain that the thing is with HMS is that it is not a condition that can be cured, it can be managed but not cured. My husband is used to me being in pain and I am always loathe to 'moan' however I do express it and he does listen. In part when you describe your relationship being at an all time low at the moment my guess is that this non-understanding of pain is not the only thing that is making you unhappy. You have reached out here and the first step toward change is asking for help, which is really brave. Have you thought about counselling if he won't go with you, go anyway. My heart goes out to you Hevsie and I hope that you soon find a way forward to brighter, happier days, you deserve better.

nonya

[Sez]

I'm sorry he's being this way. My OH has suspected EDS, so is very supportive and we seem to take turns popping each other's joints back into place . He really made my day yesterday when I was having a whine about my dad going to see the horses without me (have been on holiday for two weeks, so my boy's going to start thinking I've abandoned him soon!) and Jay said he's fed up with them "trying to take over Sal" (I don't think this is actually the case, but he was feeling a bit cross and frustrated) and if I wanted him to, he'll start coming with me to do the mucking out and bits that my dad and step-mum normally help me with and that we'd "struggle on together". This was a lovely thing for him to say because he hates horses, having had a nasty accident as a kid.

It can be difficult for some people to get their heads around. My dad has often rolled his eyes and sighed impatiently when I've said I don't feel well enough to do something, simply because there's no visible evidence of something being wrong. When we were in Estonia I got very drunk one evening and ended up doing a bit of odd, over-stretching contortionism while trying to change a DVD (don't ask.....) . I suffered for it the next day, and for the rest of the weekend, but my dad started on about "if you can twist like that you can do [whatever activity it is]".
I hope you manage to sort things out, and if he can't be sympathetic and get his head around EDS, I hope he can at least attempt to give you whatever help and support he can when you need it.

[Hevsie]

Thanks for the advice, guys.
The pain management idea is an excellent one - but I have to go regularly into rehab at Stanmore, where they also do pain management, and for some reason they don't think this would help me at the moment. I've got an appointment there next Friday, so I will try to remember to ask them specifically why this is.
However, it was there that they tried to talk to him for me. For about two days he spoke knowledgably to other people, and was good. But it didn't last.
As my mum said to me this morning: 'You just can't change people.'
I am seriously considering going to Relate. Takes a lot of nerve, though.
The doc upped my anti-depressants this morning, so maybe that will help.
Sincere thanks to all of you for your support.[/list]

[LianneS]

Hey Hevsie,

I hate to say this but maybe relate is a good idea. It sounds though as the problems that you are having with your other half arent just due to your pain. It sounds like there may be some other underlying problems though as going to relate seems to suggest big problems for you both?

I suppose talking through though should help things sort out?

Sending you hugs
Lianne