Thread for those supporting partners with chronic illnesses

[GreyCloudsToday]

Hi

I just wondered if there's anyone out there who is supporting their partner with a chronic illness, and wanted a place to talk?

NB: I am acutely aware that it's extremely difficult to be suffering chronic symptoms or pain, and am in no way minimising that experience.

Yet I haven't found anywhere to get peer support for some of my own worries and concerns. I don't necessarily want to burden DH with these, or they are things that he finds difficult to talk about.

My DH has arthritis, been diagnosed for many years. His pain and fatigue symptoms have changed from a relapsing-remitting pattern to being totally constant for the past 6 months. I guess both of us are struggling a bit with communication and there's an element of worry about the future. Plus all the usual challenges of small kids and work!

to all affected by these tricky illnesses

Hi yes me, my DH has an autoimmune condition and I totally agree it's rubbish for him and I do all I an to support him but I find it really tough at times.

I have a fairly demanding job and 2 DC and I sometimes find the toll his illness takes on us hard to a manage.

My DH has been diagnosed for 9 years now and we have been through some really tough times as a result, like your DH the relapse and remission can seem relentless. My DH has an appointment on Friday where they are likely to change his drugs as they are costly, I'm so scared of going backwards again.

Do you do anything to look after you? Or is there no time to do so? Do you and DH discuss his illness or do you tend to avoid this?

I'm only asking as I ended up having counselling and am now in a much better place to deal with the ups and downs, we didn't talk but now we do, and things , have improved even though I know things can change I feel more positive about the future.

I like the idea of chatting to other partners in this position, I do feel selfish at times as I'm not the one who is ill but, it's so tough.

There's a book called the Selfish Pig's guide to caring. Written by a male author who was looking after his wife (can't remember what chronic illness she had).

It is a brilliant book, and I'd highly recommend it. It really can be difficult being the 'caring' partner all the time, especially when you work and have small children. It is incredibly difficult and equally we (the partners/spouse) are supposed to be silent, good carers and never feel frustrated by the situation, because only the person with illness is affected.

It is more difficult for the ill person, obviously it is and we wouldn't stick around if we didn't love and care for them, but there are days when actually I get annoyed at the situation too. And I have every bloody right to be.

I don't have hobbies, as I'm usually trying to fit everything in, but I would recommend trying to find time for yourself. Also accept any help given when your other half is having a difficult period/is very ill.

I hope this thread isn't hijacked. If we are anything less than saintly then we may as well be akin to Ian Brady or Hitler. Ho hum.

Thanks for starting the thread.

My DP also has an autoimmune condition. To be fair I wouldn't call myself a "carer" but his health condition definitely impacts our relationship.

It's so amazing to hear your views it's not how I planned my life and yes I love my DH but, I do get fed up, I did wonder about people popping on to tell me what an awful person I am, waiting for the barrage of insults. Until you are in the position you can't possibly judge. I will look at that book any help is welcome.

Oh wow thanks for posting. It took ages to psyche myself up to start the thread as I've seen some other threads on here take the Brady / Hitler route!!!

I will definitely look up that book SoxonFeet it sounds ideal.

rupertpenryswife I really relate to what you've said. I've just finished 6 months counselling and it's been a good experience. I am in a very niche career and I've had to give up a big chunk of that as travelling just doesn't work for my DH any more. It was great to talk through the emotional fallout of not having choices at times, and not being able to pursue the kind of life I had expected.

DH and I struggle to talk as he copes mainly through denial, and of course I just struggle to 'get' that pain makes him withdraw. Yet at the same time, not communicating is not really sustainable over the longer term so we need to find a way through.

I'm so glad you feel more positive about the future . My DH managed for a long time without meds and is only just trying them now, which I think is part of the reason things are a bit of a challenge.

I know what you mean about the 'carer' language LadyBlackBird it's not so much direct personal help but sometimes just taking more of the strain.

I meant to say I hope Friday goes ok for your DH rupertpenryswife and you don't have to change treatment at this stage.

Thank you so much grey it's great to talk to others in a similar situation, for ages we didn't talk as if ignoring the issues would make them go away. I know what you mean about the drugs my DH is an immune suppressant injections at home which is yet another constant reminder, we can't really go on holiday at the moment due to this so that's tough on the kids.

We are currently saving money as, if my DH runs out of drug options he may need major surgery and does not get sick pay.

Anyway I'm off to work, thank you for listening to me going on and on. I hope everyone has a great day.

Hey All

I thought I'd check back in on this thread. How did your DH's appointment go @rupertpenryswife? Mine is taking new medication which is always very challenging. He is getting excessive fatigue and with me being pregnant we are quite a low energy household right now!

Work client has been messing me about and downscaled my project which is a bit of a financial blow. But still some money coming in at least.

Hope the brighter days are cheering everyone up a bit.

Hi it's really tough to carry on sometimes don't you find? My DH not great, his results are disappointing so needs more tests to see how we move forward, I'm trying to not give this much headspace as I know this sends me the wrong way.

grey new meds are difficult you never know what the impact will be and its rubbish if it zaps his energy too! As if the illness is not enough. Congrats on your pregnancy I forget do you have any DC?
Hope your DH starts to feel better soon and the meds improve his condition, keep ur chin up and keep looking forward, if possible you need to find time for you so you don't get lost in it all.

Yes, I find it super tough rupertpenryswife and it's really reassuring to hear your experiences too. No-one else really gets it, and I don't want to feel like a misery guts dragging down my mates with this stuff all the time.

I'm so sorry your DH results were not the best. Are the extra tests invasive or ok? It's the uncertainty that each new round of investigations brings that's so hard, isn't it? It seems like even the specialists don't know what's going on with autoimmune stuff at times.

My DH is up and down, mostly knackered and still in pain. I know he's having a hard time and it is really super difficult for him, but I find it a challenge to live with the low moods pain and tiredness bring. I don't know how to have enough energy to do a bit extra round the house and try to lift the atmosphere too. Though counselling has helped me see it's not my job to "fix" things and that my desire for things to be "ok" can be extra pressure on the situation.

We've got a DS3 who is amazing, and brings maximum laughter to our house. I know DH is terrified about how we'll cope with the new baby. I am too but I'm also just so excited to meet him.

Hey grey I don't often talk to my friends and family as I want to appear 'normal' yes the tests are invasive and still waiting for a date, I am medically trained so have a lot of knowledge in this area which is tough.

Yes yes to not trying to fix things if possible you need to live in the now, not what may or may not be, it's hard to keep things going and I guess for your DH when he feels like he does there is no let up, the difficult thing is my DH appears well but the test results say otherwise, at his appointments I can literally feel the my heart sick.

On an amazing note though a new baby how wonderful, I love that excitement and anticipation I wish you all the luck and happiness, and if you want to keep talking I would love that too, my DC don't need me much now but I have a gorgeous new kitten.

I meant feel my heart sink!!

Aww wow a new kitten rupertpenry'swife how sweet! Photo? We have a dear old moggy.

Things are super hard right now. Work has dried up totally for DH, whose income we are relying on. He is very depressed. My heart breaks for him, but I also feel so tired and unable to be a strong support. To be honest I just want to run away. DH is very rigid in his ways, won't listen or take advice, is hard to live with.

We just don't have much support, our families are far away. Though DH wouldn't talk to his anyway. He has isolated himself from all his friends as a result of being sore and tired. I have lovely friends but feel bad about going out and seeing them. Also am knackered from Pg anaemia. Wondering how life got so grey and heavy, and how to go on. I have some work but it's lonely and isolated stuff from home, and difficult to keep the motivation. Just can't see much good in the world at the moment, except for funny, adorable DS whose joy for life makes everything bearable.

Oops hit post too soon: I hope your DH doesn't have to suffer through too many tests. It must be really difficult having medical knowledge and understanding all the possible outcomes. I bet it makes you a great advocate for him though. I hope he has a test date and you get better news asap.

Think you might have posted on my thread. My DH has an advanced rare cancer. Currently he’s on treatment, not chemo, which is keeping him well and he’s carrying on as normal with is only side effects being tiredness. We’re hoping the dr can control it to become a chronic illness but I get how hard it is. Luckily he works for a mult national and although he hasn’t missed any work yet he has permanent disability insurance through work so if he has to give up he never goes below 70% of his salary which is more than enough. I also work so thank goodness that side of things is ok. It has taken months to make our critical illness claim but we should hear this week and I hope that goes through ok as it means we can halve our mortgage

Hi, just wanted to drop in and say hi. My DH has a chronic illness and some serious complications because of it. He doesn't work now due to his condition so we have had a lot of adjusting to do over the last few months.

Another appointment to look forward to this and probably some medication changes too which always upset things for a while.