I don't know if I'm depressed or just going through the grieving process due to recently being diagnosed. I feel so lonely. I feel lost. I feel angry. I feel sad.
I used to be so strong. The one who coped. The one who had spontaneous ideas. The one who worked through problems and sorted everything out.
Now I'm a shell.
The dynamics of family life have changed so much. My children seem so sad and lost. They tell me that they miss the old me.
My partner can't deal with anything. When I was first diagnosed, he was supportive and tried really hard to step in where I left. Now, the novelty seems to have worn off. I resent him for letting the girls down. It would be so much easier if he was ill. At least life would be easier for the children. (not that I would wish this on anyone).
We seem to be like strangers. He can't do anything without me behind him. I know that it is hard for him, but he seems to wallow in it.
I am now making myself do way too much do the girls have a quality of life. When I tell him that I'm fine, he believes me. I'm not fine. I'm in agony and so exhausted.
I have tried to talk to him. I don't know if he isn't listening or doesn't care.
I know that chronic illness puts a huge amount of pressure on relationships. But I feel that I'm having to cope and he chooses not to.
Sorry for the rant. I hope it makes sense.
Louise. Xx
p.s why do we say we are fine when we obviously aren't?!
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purple-lou
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All I can offer is a cyber hug and sympathy Louise. You're certainly not alone in either how you're feeling or how it's affected the dynamics of your relationship with your partner. It's sadly pretty common and possibly even "normal" for them to withdraw. You could be writing those words for me (and I'm sure others in the forum). Before things go any further might I suggest couples' counselling? This is a BIG thing and needs to be talked through in a controlled way with the help of a qualified mediator. Of course, not all partners will agree to this - you can but try. Definitey not a rant. I suspect we say we're fine when we're not to make ourselves seem less of a burden to others. That's why orgs such as Lupus UK, who put people with similar problems in touch with one another, are invaluable. Chin up. oxo
I will start from answering to your last question. We say we are fine because most people cannot handle the 'burden' of having a sick relative/friend etc. Listening to us explain that we don't feel well makes them uneasy, spoils their moods, makes them uncomfortable. THere is not much they can do (or too much they could do that they don't want to do). AT some point many just slowely leave us behind becasue we are not as happy, active and fun as we used to be. So we prefer to lie and not put this 'burden' on them. Sometimes we just don't want to make them worried (e.g. our children). Sometimes we prefer not to admit that we are unwell becasue that makes ourselves seem weak and we want to be strong and not give up.
It is not great when we cannot share the way we feel with our partners though... Last time my I told my partner that I'm stressed becasue it seems like my lupus is getting worse and worse and he said that I should go see a psychiatrist becasue clearly feeling stressed about lupus is unreasonable and there is something wrong with me... so yeah! I keep some things to myself now.
If it comes to the fact that your husband cannot deal with all the everyday activities, well, maybe you can help him in some way. Plan everything, make a list of things that he should do etc. I guess it can hard for him to take over after you if he never did these things before. You need to be clear about the fact that you can handle specific things and he should do that instead. Be direct and to the point. Afterall men don't understand hints and subtleties ...
One last thing. Don't pretend to be strong in front of your husband but save all the energy and strength for you daugthers, one day they will be strong for you but now you need to be there for them. xx
Artemiss you have explained this so well and I'm sure it is something that many of us can relate to. If only people realised that don;t have to 'sort it' and that they can help by just listening. I like the following poem for this reason: The Wise Owl
((hugs)) I totally understand what you say, and reiterate the other answers, by the way you express yourself really well and it maes totall sense. I don't have any more suggestions, just to say that I understand. xxx
Hi Louise, Bless you and again more hugs and complete empathy for what you are going through.Artemiss has said everything so well above. All I can say is I fully understand what you are saying as will most on this site. It seems as though a lot here have been copers before and when that is stripped away from us we feel cheated and the dynamics of our relationships change. I take my hat off to anyone who has younger children/teenagers at home and are dealing with lupus as it must be sooooo hard. Big hug to you and I hope and pray that you get the support you both need. xx
It is grief - mourning who you used to be and what you used to be able to do. Struggling to understand how the future will pan out and imagining the worst. Anxious at every little body twitch, slight headache, small tingling, hoping it isn't a flare yet again. Panic that everything will go worse and you can't do much about it. Shock that you haven't enjoyed life yet, all you've done was work and build for a future and here comes this monster like a black cloud.
I understand, I am going through the same at the moment and it isn't nice. I was actually considering going to the GP and get some pills that would cushion this phase for me so that I awake when I finally accept it, but the thought of putting more meds into my body changes my mind every time. I read some of the posts on this site and I marvell at how calm so many are and wonder whether I will ever get to that peace and acceptance.
I am fortunate with my husband who takes the burden of this anger and sadness and inability to cook or clean or iron as before, without complaint. I am so sad that your partner is not supporting you at this terrifying time. I do understand that sometimes those around us want normality and not be reminded of the worst. But that doesn't make it easier for you.
I wish you strength to come through this stage - and of course, that your illness gets better.
Hi, I can't believe that you have also put into words the very thoughts that I have been having about anxiousness abut how things will pan out .......so very true.
Also about having worked so hard for the future and then this 'monster' of an illness comes along.
I too am lucky to have a supportive husband and 2 adult daughters who understand that this has been life changing. But then I think I am determined to enjoy what I can out of life .....it will be different than before that's all and I have to make this monster my friend and nurture it. I think we all have to go through the grieving process of not accepting, reluctant acceptance to gradually .....well it's here. I think most days I have but then I still have the days when I wobble too. It is good to know that others here feel/have the same thought processess. xx
Hi Louise - I think we all say 'fine' when we're not - it's the socially acceptable thing to say. My renal consultant phoned me once and I even told him I was fine - complete lie!
Please do get some counselling either for you and your partner or just for yourself. Being diagnosed with a serious chronic illness takes a lot of adjustment - it's basically like a grieving process - you go through all the stages - anger, denial etc etc
Even if you just go to counselling yourself, that will help you deal with your changed relationships. I went for some and it helped hugely. Please be kind to yourself.
Hi Lousie, sendiing you ((((((hugs)))))) being diagnosed with Luopus is a bereavment of the life you once lived and when you have always been the strong one people still expect you to be like that even though youa re ill.
How old are your Daughters I was wondering if sitting them down and explaining to them that there are days when you are not feeling well but then there are days when you are ok but no matter how you feel you still love them very very much, with your Patner would it be worth putting your feelings down in a letter sometimes when you talk to them they dont always listen they have to read a letter and sometimes it sinks in better hope this helps xx
Thankyou. I was thinking of writing him a letter. I think it would be a long one!
My daughters are 7 and 12. They have been amazing, but I think they are grieving too. For the old me. I have spoken to them about bad days etc. I just don't want to taint their childhood with this terrible illness.
It sounds like your children already understand a lot about your illness and love you very much I am sure there childhood wont be tainted in fact they will grow up as caring young ladies having understood what illness can do and you are a great Mum to them so please dont beat yourself up.
Yes I would try the letter to your partner as you say it will be a long one, but I need to say this my Husband I know loves me very much but he finds it very hard to understand how lupus can affect me I also have spinal stenosis and the op I thought might give me some relief is not going to happen so I use a rollator with a seat on and sometimes a self propelled wheelchair I have accepted I need these things to help me and my hubby came with me and brought me the wheelchair but I think he finds it hard to see me having to use these things as I was always an avid walker hope this helps take care (((((((hugs)))))xx
Reading all these comments has made me cry, big hugs to you all. I have not even been diagnosed yet but can already relate to everything said. Being a 23 year old mam of an energetic 4 year old boy and having to think that my life is over before it has really even began. All the hopes and dreams that I had I feel I have had to forget about. I can't do all the things I used to do as a mam, as a person. My son has certainly picked up on my ill health and often asks me 'are you feeling poorly again mammy'. I don't want him growing up thinking of me in pain but how can I hide it. How do I explain why I can't push him on the swing or play tag or play on the wii? He doesn't understand. My partner tries to be supportive but works long hours and has admitted he doesnt like talkin about my health as it hurts him that he cant help me or take that pain away. I spend a lot of time telling people I am fine as it is just easy and makes me feel less of a burdon on people.
Best wishes and hugs to all of you. I dont know what I would do without this site. It is a lifeline. Xxx
Everything artemis5 has said is so true, and has hit the nail on the head about how many of us feel this way. Thank you so much, the support on this forum is amazing.
Hi to all ,omg!........this is such an amazing topic,totally understand the greif ,anger sadness etc,16yrs i have battled ,only there used to be periods of restbite ,was diagnosed recently and this year has been a living nightmare ,no restbite,symptoms are worse than ever ,we moved internationaly back to the channel isles from australia this year and have had major stresses ,i wander if this exacerbates lupus????i feel for you ,i too am greiving and am so damn angry ,what a time for lupus to show .....need to be strong for my daughter ,earn as much money as possible etc continue to be a good wife ,cant do any of that now;(was always so driven even batteling ill health for years ,cant do it anymore ,and when i try and talk future with my partner he says dont be silly we dont need to look that far ahead ,eh.....i think we do,and am now extremly anxious.I feel everything you feel and only wish we could meet and have a good old rant over a cuppa (lol)megs tom....your right ,this blog has been a lifesaver in my eyes ,its so good to talk to others that understand and when you stated you cried reading ,guess what?????the water works wouldnt stop .I watched my mother struggle with immense incapacity and succumb to horrid disease,i never fully understood what she was going through ,i didnt really try if im honest ,i have been thinking of her so much latley,i resent others for not feeling my pain ,but how can they?????????i just feel like one big failiure,to all!i know you have read some amazing blogs and everyone has been so understanding here ,if it helps?were in this together i have to say ...its the most lonely existence ever and i envy people who can embrace these diseases head on ,for me i feel im pulling away from everyone ,as i feel almost embarrassed for becoming this way;(((and am fed up with trying to explain myself ,its to exhausting trying to be normal .I think we can come across as many things by others ,and i know how hard it is when we can look pretty normal on the outside,for me one thing im learning is to be more compassionate with others who are suffering in some kind of way ,that in itself has to make me a better person ,something GOOD to take from lupus!we are unique, and lupus or mctd and any disease to be said is torture in my eyes ,i hope in time acceptance arrives and we can relax into who we are!I have read a book called awkward bitch ,a true story about a woman with M.S ,its a fantastic uplifting read about the bravery of a woman who was struck down by disease ,and attacked it head on.Worth a read if you can?well i hope you feel better and my feelings go out to you ,positive ,mental ,attitude ,(mmmmmm! i reckon this can happen if we try hard enough/)keep well brave
Dear purple-lou, I know you've had loads of really good advice & support in response to your post, but I'd just like to add 2 things that struck me when I read your words. Firstly, you seem to be trying to carry on as normal & protect your daughters from the effects your illness could have on their lives. I am a firm believer that something good can come out of everything bad. You have to be with this illness, otherwise it will suck you under. So maybe letting them help you, & be there for you, will make them stronger in the long run. After all life is never going to be perfect, no matter how much you want it to be for their sake.
I say this because my wonderful mum, now sadly passed away & missed every moment, tried to protect me from life. I grew up thinking there was always going to be a happy ending, & it's been a hard learning curve to realize life just isn't like that. So maybe your girls will be stronger than you think for you now when you need them, & ultimately grow up into wonderful adults 'because' of your illness, not despite it.
The other point is hubbies, they just can't see lupus can they? But no one can. It amazes me every day that the people around me can't see the pain, exhaustion,confusion, tremors etc, etc, etc that I feel. I even had a rheumatologist say to me once, when I had dragged myself to the hospital & felt like a drowned rat, "you look so well." I nearly fell off my chair. It used to drive me to distraction when my hubbie would say lets do such & such today, which was totally beyond my abilities, but because he looked at me & thought I was ok. Now I just have to make a joke of it & suggest something more realistic.
But I guess the whole point of what I'm trying to say is that there are no easy answers to living with lupus. Cry when you need to, don't hold it inside, you are human not a machine there for the sake of your family. But laugh whenever you can, at yourself, your illness & the craziness of life.
Sorry to hear about the negative impact of your illness. It is hard to come to terms with a life changing diagnosis which will impact in all aspects of your life and that you have a barrage of medications, tests and hospital appointments ahead of you.
Let yourself grieve for the life that you had prior to your diagnosis but then accept the condition and not let it get to you. You will have to make changes and compromise at times but don't let it beat you down!
It is a shame that your partner is not supportive but maybe it could be that they are afraid of your future together and they are also grieving for the life you shared prior to your diagnosis. Educate them by giving bits of info about Lupus, invite them to attend appointments with you and most of all be honest with each other especially when you are struggling yo cope during flare ups.
Go and talk to your GP as they can help you and NEVER feel guilty for feeling fed up as it is a difficult condition to live with but you just have to adapt to the condition and not let it take over.
I am fairly new to this community and am thankful to be able to listen and share experiences with other people in similar situations. I have had to educate my husband, family, friends and my GP but hey the more we share the more we learn about the condition and support each other. Take care.
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My Rhuemy won't see me.. ???
I neeed your guys advice !! ❤️ 
any advice please
Feeling very down. Awful fatigue. This is the loneliest journey at times. 
Feel so alone. 
