Accepting limitations - getting my partner to understand.

[magso]

I have had a difficult couple of years with very poor health, which is still under investigation. My partner sees this only as a 'blip' and blames me for being negative. I would like to recover but have to pace myself really carefully, and pass out if i try to rush about. I have tried to get better but my body is not co-operating!!
I do not know how to communicate to my DP that actually I am ill - and that this is probably a chronic situation. I think one of the problems is that dp has not heard what the drs have said. ( We have aa autistic child so DP is with ds when I am in hospital). Dp is now planning an ambitious family mountain trip - ds is very energetic and just old enough to enjoy adventurous walks- which I just know I am unlikely to be fit for (it takes at least 2 adults to care for ds in mountains). Dp was absolutely furious with me when I suggested I may not be fit enough- saying he was fed up with my negativity. (I did of course suggest alternatives such as doing a climb or trip with a friend - dp is after all still able and needing physical challenges). How do others manage to communicate? I fear this may tear us apart.

Magso, didn't want this to go unanswered.
Is there anyone you could ask to look after your ds so dp could accompany you to your hospital visits? dh often comes with me so is able to see firsthand what is going on and able to support me as such.
When you say your health is under investigation, does that mean they are not quite sure what is wrong? It can be incredibly frustrating not having a 'label' when it comes to this kind of thing - I was undiagnosed for many years and sometimes people would treat me like a hypochondriac or as if I was not 'trying', becuase I was unable to say what exactly was wrong, apart from vague chest problems. It was a relief when diagnosed, so possibly if you get some kind of dx it may help as you and dp can read up on it.
One thing I have found helpful again and again when explaining to people how my disability can affect me is the spoons theory
This is pretty long and refers to Lupus but is applicable to all chronic conditions i think.
I do sympathise - it can be hard for the people closest to you to understand how chronic illness can affect you from day to day. Saying that, he sounds like he's not being particularly sensitive and needs a bit of a kick up the nether end.
good luck.

Thank you Madhairday. You are right- I do not have a diagnosis. I had a condition (the tip of the iceburg after a long period of decline) most often associated with auto immune disorders like SLE (and some immune markers for SLE) and was O2 dependent for a while in a far off hospital which made visiting very difficult. I also have asthma which has played up since - something that has never really been a problem in the past.
It is a good idea to show DP the spoon theory (and have learnt myself from it) - I have a copy however as I dont have a Dx of SLE I wonder if he will take it on board. I think DP thinks I am imagining things and being a doom mongerer. He also thinks the hospital over-reacted. My DP is a lovely man - just not good with illhealth or weakness (he is very fit and healthy himself). Perhaps I am being pessimistic - I am going through a better patch just now perhaps I should be thinking in terms of recovery.

Sorry to make light, but denial is not a river in Egypt. Your hubby is taking his time to accept the new you. Infact he probably doesn't want to as it involves such major changes for HIM. Frankly if you have been in hospital on oxygen he should have realised by now that something serious is going on. So perhaps he doesn't want to.

I am hearing undertones that you are not feeling supported / loved / understood because of this. Which doesn't surprise me. Sometimes the partners we choose when we are healthy are not the best ones to support us when things go wrong. Despite the in sickness and in health vow.

What to suggest, I don't know... but I hope that things get better and he finds a way to deal with it. xxx

I do hope he listens to you more, even without a formal dx. You have been pretty seriously ill and your body sounds v weak and he needs to take this on board. Don't think you are being pessimistic, sometimes it is an achievement just to get through the day. I hope he shows some more support soon, and meanwhile that your investigations throw some light on the problem. I don't know anything about SLE but know auto-immune diseases can be debilitating. Good luck x

I was dx with ms 7 years ago, after having been ill for about 4 years. My dh still doesn't understand, still feels frustrated; he is better than he used to be at least.

He does now understand if I say I can't go camping with him and dd; but he doesn't really understand how hard camping is, so if I do go he expects me to be able to just do stuff as if we were at home!

The Spoons Theory looks really helpful. I am going to show it to him, too. Fingers crossed, eh!

FWIW, my mum told me of a friend of hers with a chronic something or other (can't remember) whose husband just closed his eyes to it completely. Apparently, she found ways to work around his utter rejection and denial and they were perfectly happy together. I, personally, didn't find that at all helpful

Thank you all. I think it is very hard for an active healthy person to understand how hard everything is when another is unwell - but looks OK. I think I will have to find a way to gently let DP accept me as I am now.