Told OH - not the reaction I'd hoped for....

fairydust81

Well I decided to tell my OH tonight about the RA diagnosis - he's always been pretty good with the endometriosis and the numerous surgeries I've had. Anyway, I had mentioned the RA but he didn't realise it had now been diagnosed. So I told him yes it's been diagnosed hence the steroid injection, and his response - well it's an early retirement for you then (I'm a research scientist and ironically I have spent years researching RA lol). So not the reaction I'd hoped for...was hoping he'd give me a hug or something but no, nothing...

I read someone elses post about feeling lonely, isolated. Well that's exactly how I'm feeling right now....it's like a huge grey cloud, I have worked on RA for so long and know all the ins and outs from a scientific point of view, I have also spent years working with rheumatoid patients so have seen the effects this disease has, but facing it myself now is such a surreal feeling....one that hasn't yet sunk in.
I am so sorry for moaning here, I just don't know who else I can talk to, because I am a scientist working in a rheumatology department (it has it's perks such as my rheumy being next door) I feel that people think it's impossible that I could have RA....and that in turn makes it even more isolating...

Sorry everyone, I've just had a horrendously bad week, other health problems ongoing and other problems too.....just feeling sorry for myself, I have no pks and am really feeling it tonight....does the steroid injection normally make things feel worse before they start to get better? My ankles, wrists and fingers are really aching and painful tonight Not good...

OK will stop now, as you can probably tell I'm feeling very sorry for myself and am finding it very difficult to cope with all this

Wonkylegs

fairydust81 wrote:

I am so sorry for moaning here, I just don't know who else I can talk to, because I am a scientist working in a rheumatology department (it has it's perks such as my rheumy being next door) I feel that people think it's impossible that I could have RA....and that in turn makes it even more isolating...

HI Fairydust (love the name )

welcome to the club we'd all rather not belong to :roll: :roll:

I am so sorry that your day was not a good one. I can understand your disappointment that your OH didn't react how you had hoped, but no doubt it was a shock for him too, and hopefully he will come round to the thought that a hug might be good

NEVER apologise for moaning on here .... it's one of the best things about this site ..... someone to moan to who won't feel we're getting at them about something or other !

As someone who has benefitted from the advances in medication for RA in recent years I'd like to thank you and your colleagues for all you do for us....... and also to say how sorry I am that you find yourself in this awful position. I can't offer you any specific advice from your situation, but I can say that the Arthritis Care helpline people are really friendly and are excellent listeners if you ever feel like giving them a ring (number at the top of this page)

I do think that there have been other medical professionals on here with RA< so hopefully someone might see your post and reply.

until then here are some soft, squishy hugs just for you (((())))

(there are always some Wonky hugs under the sofa cushions in the cafe on the chit-chat thread if you need them )

take care
WOnky

angel1

Sorry you didn`t get the reaction you wanted - needed - from your hubby. Is he one of those people who believe an "Oh well, thats life" attitude is helpful? If so, tell him it`s not, and explain what you do need right now. It`s amazing how often the people closest to us, seem to have the least empathy.

Your comments regarding your work, and the attitude of others towards it, and your diagnosis, really struck a chord with me. Because I have worked as a Counsellor for many years, I find that people are totally unable to grasp that I sometimes find life too much, or need hugs and someone to just listen to me. In fact, on one memorable occasion, I tried to tell a "friend" that I was feeling low. Her reply "But you`re a Counsellor"!

I hope you will try to talk to your hubby. You are going to need him to be there for you, and support you. In the meantime, know that we are all here for you too...........Ange. x .

dreamdaisy

It's not only a huge adjustment for you, it is for him. It's a steep learning curve for the two of you and you need to keep talking to each other about this and everything else. From your scientific background you might think you know the implications - the reality may be very different. I am cross-eyed with tiredness, I can't think of anything else to say. If I have any bright ideas I'll come back. I am so sorry, for you and your husband. Things will be tough for a while - but keep those channels of communication open. That's vital. Dreamdaisy

valval

fairydust81 wrote:

Well I decided to tell my OH tonight about the RA diagnosis - he's always been pretty good with the endometriosis and the numerous surgeries I've had. Anyway, I had mentioned the RA but he didn't realise it had now been diagnosed. So I told him yes it's been diagnosed hence the steroid injection, and his response - well it's an early retirement for you then (I'm a research scientist and ironically I have spent years researching RA lol). So not the reaction I'd hoped for...was hoping he'd give me a hug or something but no, nothing...

OK will stop now, as you can probably tell I'm feeling very sorry for myself and am finding it very difficult to cope with all this

hi firstly i want to say thankyou for your work on this and what you are feeling is normal and we do understand you will have to remember that it is new to your other half and men do differ to us how they react you sometimes have to tell them straight out how you are feeling they just do not get it do not jive up work till it suits you you will have a unique into how arther affect people it the mental that is as bad as the physical hugs from me here if you need me val

skezier

Hi Fairydust,

I am sorry you didn't get the reaction you hoped for, maybe he also is in a bit of shock? It can take a bit of time for those around us to grasp things as well as us.

I understand the feeling of isolation, i really do. This lot are here for you and will help so much to get you through the shock and fears. Sometimes its difficult to begin with but one you results are back and you start the meds your Rumo puts you on it does get better. I know you know that from your research (I thank you for that as well) but its not always as bad as you think it will be.

Sending you ((( ))) and your not isolated with this lot here, promise we do understand even if we can't actually help. Cris x

fayrose

Really feel for you Fairydust, it was probably my post you saw about the reactions of my OH and family members to this illness. :roll:

The others have said all the things I would have done, but I'll just add this: there is absolutely no need for this to be 'early retirement for you then'. Its thanks to folks like you that we have so much to help us these days and new things are happening all the time.

PLEASE keep working as long as you can and want to.

We're always here and more than happy to hear and share the bad stuff as well as the good - ((((hugs))) from me.

Fay xx

valval

fairydust do hope things are better today and your oh gets his head around the arther thing the shock takes a while to wear off and you will go through angry, sad,glad(you know it not in your head) frustrated,but then you realise you have had arther for a while and coped now you know what it is you can take meds to help and life will be easyer when it under control you are an educated person and know more about it all than most of us but we have been through most things so will always be here wether it to listen or advise you are not alone val

wibberley

Hi Fairydust,

Sorry to hear about the diagnosis and your OH's reaction. I think he needs to be told that a little more sensitivity may be in order as is a big hug!

There are varying degrees of RA (as you know!) so try not to worry too much - arthritis loves stress! Once you are on the right meds, you should start to feel much better.

Lois x

frogmorton

Hi Faiydust

I am so so sorry that the OH didnt respond how you hoped.

That will be his own shock too and a bit of deial at work. I hope over time he will be able to talk more to you and you to him.

It's early days and I understand what you mean about where you work and they way that makes it almost incredible Almost like aself fulfilling prophecy....Unfortunately its just bad coincidence and for you makes it ahrder as you knwo what the future MAY hold.

For now come on here - talk to us we will support you while your meds get sorted and your head gets rounf this all.

I am so sorry

Love and hugs

Toni xx

tkachev

Sounds like a typical male response to me. Id like to think the words just came out wrong and he is as upset as you are but cant express it.i long gave up getting a response from mine.
In the meantime come and get some advice and compassion from the forum. We ve all been in this position and pondered what it will all mean. Id like to think meds will help you carry on with your valuable work...I do hope so,

Elizabeth

barbara12

Hi Just want to say you moan away, we are always here to support one another, It really helps to get things off your chest.
Like someone else said , give your OH time , then talk to him and tell him how you are feeling, you may get the hug you want.
I do hope you get the pain under control very soon.
Sending you lots of very gentle hugs (((((())))))
love
Barbara xx

tillytop

Hi Fairydust, I am so sorry that you didn't get the response you needed from your husband when you told him about your diagnosis. Being diagnosed can be a very isolating experience and it's obviously something both of you will need time to come to terms with. I don't know whether knowing as much as you do about RA is a good or a bad thing at this stage and I can see that it must be hard to work alongside those who are involved in your treatment.

Perhaps, if you can keep sharing on here, where we all understand what it's like, until you have had a little time to take in the diagnosis, you could then ask your husband to put aside some time specifically to talk to you about it. I know that men communicate very differently and he may be worryinig about the practical, rather than the emotional implications - eg you perhaps needing to stop working at some point. Given that men seem to be much more direct in their communications, can you just tell him you need a hug?

Finally, just to add my thanks to what the others have said in terms of the research work which give us all hope for the future.

Please do keep posting - we are here to listen and to support you as much as we can.

Love Tilly x

dreamdaisy

Hi fairydust, just popped in to say I'm thinking of you both and I hope all is as well as it can be. DD

marion1952

Hi Fairydust

I agree with Elizabeth (Tkachev) - I think some men (and women for that matter) just don't know how to respond in these circumstances. They don't mean to be 'heartless.' When you tackle them about it they are usually surprised that they have upset you..

This WON'T mean early retirement. I had very acute onset of RA in 2008 and, OK, I was off work for 5 months, mainly because of medication side-effects (ulcer, etc), but after I went back to work I didn't have one day off sick for 17 months - until I went off for my hip replacement in May 2010.

It's good that you know your Rheumy so well - that's one thing you won't have to worry about.

From my own experience it took me about 8 months or so to get used to the fact that I had RA - those early months after diagnosis are very tough physically (until the medication kicks in) and emotionally...

Please keep posting - there is a whole wealth of experience on this forum and I so wish I had known about the forum in 2008.

Take care

Marion

caprica

Just wanted to add my welcome, and sorry you've had the diagnosis - what a terrible coincidence that you are a researcher!!

I hope you can keep on working because we need all the research we can get. I'm sure things will improve with time, I'm about 9 months in and feel sooo much better, emotionally and physically. Good luck!

sharmaine

Hi Fairydust

Don't apologise for feeling down. Being a sufferer of OA I totally understand where you're coming from. You can't help having RA and I suppose your knowledge of the disease makes you more aware of its effect on one's health.

I'm sending you some cyber hugs and hope that you feel better soon.

Generally men are not as sympathetic as women. That said my hubby is pretty good and I've used his shoulder to cry on quite a number of times. Men like to be the strong ones and let him know how important he is to you. A friend of mine ...always successful with men was appalled by my independant nature. She was right they like to be the strong ones and these days I play the feminine card a lot (mainly because I can't do what I used too) and they just lap it up.

I do hope you are feeling better now.

Sharmaine

fairydust81 wrote:

Well I decided to tell my OH tonight about the RA diagnosis - he's always been pretty good with the endometriosis and the numerous surgeries I've had. Anyway, I had mentioned the RA but he didn't realise it had now been diagnosed. So I told him yes it's been diagnosed hence the steroid injection, and his response - well it's an early retirement for you then (I'm a research scientist and ironically I have spent years researching RA lol). So not the reaction I'd hoped for...was hoping he'd give me a hug or something but no, nothing...

I read someone elses post about feeling lonely, isolated. Well that's exactly how I'm feeling right now....it's like a huge grey cloud, I have worked on RA for so long and know all the ins and outs from a scientific point of view, I have also spent years working with rheumatoid patients so have seen the effects this disease has, but facing it myself now is such a surreal feeling....one that hasn't yet sunk in.
I am so sorry for moaning here, I just don't know who else I can talk to, because I am a scientist working in a rheumatology department (it has it's perks such as my rheumy being next door) I feel that people think it's impossible that I could have RA....and that in turn makes it even more isolating...

Sorry everyone, I've just had a horrendously bad week, other health problems ongoing and other problems too.....just feeling sorry for myself, I have no pks and am really feeling it tonight....does the steroid injection normally make things feel worse before they start to get better? My ankles, wrists and fingers are really aching and painful tonight Not good...

OK will stop now, as you can probably tell I'm feeling very sorry for myself and am finding it very difficult to cope with all this

speedalong

Hi Fairydust,

just wanted to say welcome.

You have been offered lots of advice so nothing to add.

Just be kind to yourself and gentle on the hubby. If possible take him with you to appointments to involve him.

Take care,

Speedy

ironic

Hi Fairydust,
How are you today? I know you are still in shock but hang on in there. Things will get better. My OH put his head in the sand as he could not stand the thought of me being ill. Now he is brilliant and takes up the slack whenever he can.
Please keep posting and give yourself time to come to terms with things.

Take care,

Lv, Ix

dreamdaisy

Men are not that good at coping with reality. They are just not that grown up. Men fall asleep and they all look about 7 years of age. They have this ability to cut themselves off from events around them. We don't look seven when we fall asleep and we cannot cut ourselves off from events that surround us. It's a gender thing. It cannot be altered. Ummmm - what was the question? DD

dreamdaisy

Hello fairydust, I hope your week-end hasn't been too bad and that you and he are talking. Have you had your cuddle yet? Take care and keep as well as you can. DD

tarasmygirl

Hi Fairydust
Welcome from me. I've only recently been disgnosed with RA and at first - because it was pain in my hand that made me to to doctor - he thought that hands were all that were affected and although he did all the carrying expected me to be able to go on longs walks as we usually did with the dog. i had to sit him down and tell him it affected many joints - hips and elbows are the only main joints not affected - and that major fatigue was also part of it. Since then he has done more although like all men he does need prompting but he knows that if I feel able to do something then I'll tackle it - if not then he has to get on with it, mainly preparing the veg and carrying bags.
I'm sure your OH will come round as will your colleagues, after all working with an illness doesn't make you immune to developing it, neither does it mean you must retire from work. That decision will be your own when you feel the time is right. I don't know how far away from retirement age you are - could it be OH wants you to stop working and rest to see if that helps improve your health after all the different problems you have been through ?
Take care and gentle (((hugs))) from me
Cath

dreamdaisy

Well fairydust, we're a week on from your first post: how are things now? I hope you are feeling better/brighter about things. DD

mrs_dalloway

You are in the right place for some understanding I just wish this had been around when I was first diagnosed. Never, ever apologise for feeling down you are entitled to feel naffed off. I would suggest talking to someone about how you feel. On my diagnosis I went into denial and hoped that if I tried to forget about it would go away, that funnily enough didn't work. Also, you are definitely not at the end of the road, I just like to think of it as taking a bit of a diversion! The dark cloud will begin to lift you just have to hang in there xx

woodbon

Hi, I can understand that you feel so lost and alone. I don't have RA, but I'm sure that working in the environment, at the moment may be something of a mixed blessing, in that you have seen some of the worst sides of the disease, but thats not the reason to give up a job you love, the only reasons for that should be how you feel and cope. Working helps with self worth. I hated giving up work, but in the end I had to, as OA became worse.

I'm sure you and your husband will come to terms with your RA. Its a shock, though and it will take time. Keep posting on here!

Love Sue

whitey44

Hello Fairydust

Can you feel the love and hugs that have been sent you way :!: :?: Sure you can; its that strange bubbling sensation that's raising its head above all the turmoil that going on in your inner world. Of course I realize you will be requiring further prescriptions over the ensuing weeks and months so please ensure that you drop in for your repeats as often as you like :!:

Believe it or not, I think you have been blessed; you are now able to see outside the box as well as in it. If you REMAIN POSITIVE and LEAN on us you might be pleasantly surprised.

Thank you for all the work you've done so far.

Look forward to hearing from you.

Take good care of yourself

Pure wishes & love

Whitey XX