Anger/emotional side of lupus: Hi guys I'm... - LUPUS UK


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Anger/emotional side of lupus

Loopylooby profile image

Hi guys

I'm struggling at the moment and don't really know what to do so thought I'd turn to you lot to see if you can offer any words of wisdom.

I seem to have gotten use to the physical things that lupus does to my body/brain and am pootling along nicely on the steroids but in the last week or so it seems to have dawned on me that I have this bloody illness (diagnosed about 6 weeks ago) and out of nowhere i am consumed with anger.

Now normally i am known for my patience and understanding. It takes a lot to push my buttons and get any kind of reaction from me but in the last week I've been really arsy, seem to have swallowed too much 'truth juice' and have a very low bullshit threshold.

I don't have the patience for anyone, get out of my way, I don't want to talk to you and I don't want to listen to you.

This has totally come out of nowhere and I am at a loss as to what to do with myself. I can hear myself saying things and thinking god that wasn't nice! I guess it's best described as mega extreme pmt!

I don't really give a toss about being arsy at the moment (clearly) but it is driving my friends mad and I would like to still have some friends in a few weeks time. I think I'm angry at the loss of my life as i knew it. And I can still lead a fulfilling life etc but i can't shake this anger at this bloody illness.

Has anyone else gone through an angry patch after they have been diagnosed or dealt with other emotions after diagnosis?


Ps, I know this makes me sound like a really horrible person but usually I'm the total opposite which is why I don't know what to do!

29 Replies

It's not you it's the illness that does it. I thought l was fit and healthy with just a few aches and pains, didn't know l had near kidney failure!! So like you was very angry and in denial that things wouldn't get back to normal ever again. It took me over 2 years to get to grips with it all - still angry but learning to deal with it more each day.Speaking to others is the biggest help you can get - others in the same boat. Don't beat yourself up about it hun xx

Im afraid since I developed lupus I get horrible emotionsl outbursts, its like I cant control the contents of my head. Also, with your new diagnosis you will be going through the whole grief cycle thing so it might ease off a bit. But mainly, that can be a very definate side effect of steroids.....Good luck with eveything xx

Hi all,

I'm very new to all of this and never shared my story before, , I also seem to have out brust of emotions (I'm going through an belt of it at the moment), I drive my husband to the point of dispair, as I get paranora that I'm not good for him etc. To me the pain is acceptable but this emotional/paranora is worse part, but then that's just me.

Silvermyst profile image
Silvermyst in reply to jane74

Hi Jane :)

Lovely to hear you comment and very much look forward to your input in the future :)

I can empathise with this as my poor hubby catches the brunt of my emotional outbursts, I really feel for him and wonder why on earth he stays with me, BUT he does and that means the world to me.

I think that most of the folks on here can relate to your comment in some way, they always say that the person you love is the one that you will hurt the most... while I don't think I actually hurt my hubby (though I may be completely wrong about that!) I know for a fact that my diagnosis and consequential emotional ups and down effect him far more than he lets on. I'm just thankful that he is a tolerant and lovely guy :) x

TERIELLS profile image
TERIELLS in reply to Silvermyst

Long before I was diagnosed, I had swelled up 11 inches in my belly and 40lbs with bp spikes, although I wasn't really eating...My last outbreak lasted 7 yrs. and although I was always overly emotional since age 12, I got to the point where I was swelling up at 52 and by 56, i could barely do anything. My mind was a mess and I was calling my husband at 10:30am at his job and just RAGED AT HIM every day...I knew I should shut up, but just kept on, as if I couldn't stop myself...he died unexpectedly while i was sick and I spent the next 3 yrs. ashamed of my behavior..I assume this is a symptom..I often think people are talking about me behind my back and even plotting to keep my grandkids from me. I started believing that I was unloved and unloveable

Dear Loobyloo,

y'know, I really feel for you. When I was first diagnosed ten years ago, I was grateful to the doctors for naming The Enemy within; at last I had a tag by which to grasp the thing that had attacked me; y'know, this whole myth about knowing the name of one's enemy gives you power over it? Anyway, I kind of sailed along on this euphoria that if I practised "loving thy enemy" (please don't laugh at my innocence! :) ) then I would manage it and begin to get better. It kind of worked; I am actually very well compared to most people with lupus. But last year, the anger kicked off. It suddenly dawned on me that I had spent my whole life taking care of this body- watching my diet, exercising, not consuming chemicals, or smoking or drinking alcohol, or keeping late nights; you get the picture. I was fit and healthy and had only ever had a few days illness when I had 'flu way back in Dec 1978. How dare my body rebel against me! Mutinous, ungrateful lump of lard! Steroids made me gain tons of weight! Chemo made me bald! My whole life is now controlled by the fatigue I suffer with. But there are ways of dealing with it that help one to cope. I personally have been taking Bach Flower Remedies to help with the anger. You may have heard of them; you may even be using Rescue remedy. But Holly is what helps me with the anger. They are completely safe to take alongside conventional meds; my own consultant was aware that I was taking remedies and even though she was not convinced they would work, was happy to let me take them. But besides the self-help, have you checked out the side effects of any meds you are being prescribed? A lot of them can cause depression/ anger. Speak to your consultant and be honest. You'll find you're not alone. :)

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Hi, the stages of grief at losing your health and the more physically and mentally active person you used to be, steroids and neuropsychiatric lupus, or just lupus, might be the cause of your anger.


grief - counselling, anti depressants as anger is a form of depression (seen enough psychiatrists to know) - see your gp. EPP expert patient programme- look on internet for nearest course (free)

Steroids - review dose, mood stabilisers (steroids magnified my mania and aggression - see rheumy/gp

Neuropsychiatric lupus - research it, speak to your rheumy/gp and get referred to a psychiatrist. (I was diagnosed with an organic mood disorder caused by lupus)

Lupus - you can see the professionals as above, try natural remedies, but what I tend to do is just avoid people and give fair warning - tell them you feel like you have constant PMT and that you're sorry but you can't control it ( shoelw them this blog) Some times all I want is a machine gun and a hammer, you can imagine what I'd like to do with those, oh and a padded cell, lol.

Hope this has helped. Good luck. :-):-):-)

Loopylooby, I can totally relate to your feelings. I was diagnosed in 2010 (Dec) and was initially relieved to have a diagnosis and an explanation of why I had been so unwell for so long. Whilst I remained in work I managed to keep my feelings of anger and frustration at bay, however, since then I have given up work as the illness progresses and this made me so very angry.It is difficult to explain the level of anger I felt, whilst not a religious person I even blamed God for a while, feeling someone should accept responsibility for this illness that was controlling my life.

I'm pretty sure it's a natural part of the grieving process, we have in fact lost a major part of our life - namely our good health. This illness places limitations on us that my brain for sure could not grasp, also the fact that there is no cure prayed heavily on my thoughts and feelings.

How dare the medics tell me 1) they cannot cure me, 2) they cannot tell me how ill I may become, 3) they've no idea if I will suffer organ involvement 4) and one of the most annoying things is they dare to say my condition is MILD!

I could go on forever about all the thoughts and feelings associated with my anger and levels of resentment i held, but can tell you this passes. I slipped from anger and frustration into being upset and crying frequently.

Two years on I often return to this range of emotions but visit them only briefly, a bit like distant relatives you dont have to visit that often, but then return to the feelings of being grateful that my illness is not critical, also that there are lots of people worse off than me, and trying my best to live one day at a time, enjoying the small pleasures in life, like meeting fellow loopies at meetings, doing some gardening or baking cakes. A massive change from my previous fast paced life, but one I've had to come to terms with.

Please dont be too hard on yourself, if you can explain to those closest to you that you are struggling coming to terms with your diagnosis and the future prognosis then I'm sure those who love you will still be there for you when you come through the other side of this, as i'm sure you will. I guess right now everything else sees so insignificant compared to what you are going through and there comes the frustration and intolerance, but i'm sure you will get back to a more balanced way of thinking.

Take care and be sure to vent your feelings on this site, as we can understand where you're coming from,

Slowmo x

It's normal, what you're feeling. You're making the transition from healthy person to one with a chronic illness. Lots to adjust to and no one to blame, so you're bound to take it out on others. Meds don't help either. Just accept that it will take you few months of this until your mind gets to grips with what it means. Meanwhile tell everyone that you'll become unrecognisable for a while but that you'll be back soon and not to take it personally.

The "get out of my way" bit is spot on, I used to feel that so acutely and still do sometimes. But I've learnt to disguise it, it isn't fair on others that we're ill. Well, it isn't fair on us either but we just have to live with it, we have no other choice.

Chin up, it isn't a short process but you'll get there in the end. X

Personally I always put this down to the steroids. When I was on a higher dose I found it to be worse. To the point where if I ever flipped out at work my colleagues used to joke about 'Roid Rage'. It is something I have learned to manage although it took a long time. I always take a step back now and try to think about why I feel how I do.

I would second what kinnea says - blame the bloody steroids! The effect accumulates in your system over time so, assuming you've been on them now for about 6 weeks, the mood-altering effects might be kicking in. They might go back to normal too, after a little while longer. Or not! Give it time, monitor it and see how you go. And tell your friends it's the drugs, not you! :-)

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Hello everyone. I m reading your posts with interest as I am a 'not yet diagnosed' person. I am due to see a Rheumatologist in June. I have had various symptoms for years - joint and tendon inflammation, urticaria, dry eyes, bouts of fatigue - most of which came and went and I otherwise remained fit and healthy enjoying running marathons and half iroman distant triathlons. I have been able to do this whilst working full-time and raising my family. The last 2 years have seen a steady decline, with me initially seeking help with feelings of anxiety and depression, which I thought got worse around my period. I started low dose citalopram which helped a bit. Last summer I went to abroad for work and could not shift the jet lag. I had a headache for most of the week and developed urticaria after being out in the sunshine. This improved when I got home but I started to feel increasingly lethargic and then by October last year I couldn't even face getting out of bed in the morning. But I did because of work and family. I then went to see the GP thinking I might be a bit anaemic. Bloods showed my white cells and platelets were down but my Hb was normal. 3 re-checks later and the bloods haven't shifted much either way. Within the last 6 months I have had repeated colds, urine infection, mouth ulcers, headaches and chill blains. The latter prompted an antinuclear antibody screen which showed positive for ANA -Ro and ANA-La. So the GP has said possibly SLE but I need to wait to see the consultant. Overall I am not doing the sport that I love and daily chores and work are hard going. I was awake at 2am feeling exactly as Loopylooby. I am worried about my relationships. Sometimes I hope that I will just not wake up. Sorry to pour this out to you all, especially as I don't yet have a diagnosis but the stress of not knowing is making me feel very down. :(

jacamac profile image
jacamac in reply to Hidden

Hi madlottie, don't worry about not being diagnosed and using this site for info and support, it is really helpful if you recognise and can relate to others who have been diagnosed. Keep a diary of how you are feeling and take it with you to rheumy. I was only diagnosed in January this year so all relatively new to me but took 6 months of different tests after I contracted cellulitis in my face, it left me with the lovely butterfly stain - people tell me I have a"lovely healthy glow" - you have no idea how difficult it is not to slap a lovely healthy glow on their cheeks sometimes,lol. My sport was football, coaching and helping to run a club but no energy now - I am still working although seriously have to push myself to go sometimes although I love my job. Finally, stress will make you worse, whatever the diagnosis, easy to say and hard to live with it, but please try and worry less, arm yourself with as much info as possible -you have already started by the sounds of things and find a reason to wake up every day, life is worth it, even with this loopy disease - please take care of yourself :))

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Hidden in reply to jacamac

Hi jacamac,

Thank you for being so kind. It is interesting that after reading the posts yesterday and then posting all my woes I actually felt better and had the best sleep in ages last night....still woke with headache, stiff joints and a foggy head mnd you....but knowing there are people who really 'get' what you are saying is so helpful. Great suggestion re: keeping a diary. Have started today. :)

i agree with all those pointing the finger at steroids. after yrs of being on varying doses of steroids for crohns and becoming like a volatile bomb who would argue with my own shadow on high doses, a new consultant identified steroid psychosis. i have been told this is not uncommon and can lead to complete confusion and delirium! im new to lupus and still awaiting rheum review so i am dreading them telling me i have to go on steroids again. with the crohns i ended up on azathioprine and then mercaptopurine as i couldnt tolerate the steroids. trouble is steroids are such a cheap option and i think drs try to get patients to persevere with the awful side effects which can be as debilitating as the illness

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Hidden in reply to willow24

yep I too am dreading the possible need for steroids.

Loopylooby, sorry but I just had to laugh when I read your blog! I could have written it... I love the bit about the truth juice, so many people have recieved the cutting edge of my tongue this month! Like you, I am usually so quiet, in fact I am frequently being told I am too nice for my own good. It's a hard transition from being well to having a chronic illness but the people who really care will understand (I keep telling myself!). If we both end up as billy no mates we will have to meet up!!!!

Reading the answers it seems we all react the same way, firstly glad to have a name for what we have then the realisation that this is it.... it aint going away.

Its so nice to have people around who understand and can share experiences and coping mechanisms

When I logged in and saw 13 responses to this and then read them all i just cried! Thank god I'm not the only bundle of hormones at the moment!!

I have been taking citalopram for the last 3 years at quite a high dosage so i am used to what the depression side of things feels like but this is totally different - i just can't tolerate people.

I am hoping that this is a natural reaction to the grieving process of being diagnosed (although initially i was over the moon to have a 'name') rather than steroid induced or lupus induced but I'm keeping a record and will discuss with Rheumy when I see him next (although I feel he is pretty useless)

Thanks so much for all your responses, they truly have made me feel so much better and I'm grateful you all took time to help me out.


Ps - DaleDiva, the blog was a severely edited version of the original as wasn't sure they would let me post it - and THAT would have been an epic diasaster of angry proportions!

Dear Loopylooby, I think most lupies go through emotional ups 'n downs (particularly downs!) after diagnosis. I was diagnosed about 15 years ago and it took about a year before I was able to accept that lupus was part of my life. During that time I had periods just like you describe. It took even longer before I could accept being disabled. To learn to accept to live with a chronic condition is a grieving process and it does take time. All of us have times when we don't want to talk ..let alone listen! But we do get through it - and with a little bit of understanding (and support from friends like 'HealthUnlockers') life can still be good.

Good luck! xxx :)

Hi Loopy!

There is very little that I can add to this except that add me as another that suffers the effects of steroids and the whole crappy Lupus diagnosis and subsequent damage limitation exercise that I like to call my life ;)

My moods are erratic to say the least, I can change from normal (well as normal as I ever get...) to irate/angry/distressed/frustrated and a whole myriad of other emotions in super quick time and with no prompting whatsoever...!

Personally I think the relief that we feel when finally diagnosed is rapidly overshadowed by the overwhelming truth of the matter and it takes time (some longer than others) to adjust. I personally manage most of the time but still go through periods where I grieve for what I have lost/missed out on because of it all...

BUT having people that understand how you feel and to share things with is so important, this is a fantastic place to come at all times, good and bad, as the folks here truly understand, in ways that often family/friends can not.

All the best and keep smiling :) xx

When I'm well which is seldom I'm happy and smiling but the rest of the time I go through periods of gratefulness to my hubby to wanting to divorce him. I can feel all this in one hour let alone one day. So I understand you. I sometimes feel I've been robbed of the life I planed.

I totally get where your coming from. I felt so much anger, and in some way, hate,towards other people, maybe because they don't have the dreaded Lupus. It got so bad that I was almost had a death wish. Confronting other people, manly men much bigger than me, for things like if they had parked in a Disabled bay, just so they could pop to the cash point. At one point I had a man by the throat. Now I am 5ft 2in, a weigh about 8st, this gut must have been about 6ft, and weighed at least 20st. It didn't help that he had said it is my own fault for being Disabled!. I had only asked him why if he had a blue badge. A supermarket trolly guy had to pull me off him.

I have calmed down now, maybe its because I have accepted the illness, but just please don't get on the wrong side of me.

Hi Loopy,

I hear you and I can completely empathise with your situation as you can see so many others can as well. It is, as has already been said part of the grieving process and it can go on for quite some time until we learn to "accept" the lupus. I was diagnosed 10 years ago and still I am full of anger. I don't take it out on others but on myself which naturally makes the Lupus worse, we all have our coping mechanisms. I do however see a psychotherapist/counseller who has been amazing in helping me deal with accepting the lupus and going through the grieving process. Each to their own, talk to friends, a gp, a counseller but try not let those emotions build up. Denial is a nasty one. I know. Go slow and be very gentle on yourself loopy you have just been told you have a chronic illness. Don't run before you can walk. Thanks for mentioning your anger on this site because it has helped me realise that I am not alone either. Good luck and again be gentle.



I think a lot of us Lupies will be angry, when I was diagnosed in 2006 I went from denial, anger, frustration, depression then with some counselling from my work HR department, acceptance. Anger is your way of dealing with Lupus at the moment, you are understandably angry about the change lupus makes to your life. To be honest it took me years to come to terms with Lupus, but I have to say learning to accept what is changed my feelings and outlook completely. I'm not saying give into it, but just have a calm acceptance of what is and a realisation that we cannot change what is, just accept and appreciate the things we can do now rather than worrying about the things we cant do anymore. Focus on the positives if possible appreciate all the great people you have in your life etc. Also I find when things are bad and you are really unwell just take one day at a time and don't worry about the future because nobody knows what's in the future. Sure when I am in pain and fatigued and can't think straight I feel angry and emotional still, but at least we have each other here to share our feelings and gain support from one another, that is something I am very grateful for as I have only just joined! I am sure your true friends will understand why you are angry and will be of great support to you, just keep talking it out, that's what friends are for after all.

I know what you mean I've noticed this to, I've had lupus 24 years, I know sometimes people can lose their temper, and like anyone things used to annoy me and that was it, but for the past 5 years, I've got really angry doctors put it down to the fact I'm menopausal, but I'm not so sure.

Hi Loopylooby

I totally sympathise with you. I have had Lupus for twenty years and have been hospitalised recently due to an infection on my skin but before I was taken in some people were discussing me in the highstreet and I too heard words coming out of my mouth and me thinking - I couldn't have said that.......good job I didn't have my children with me!!! It is hard when you are in pain and sometimes your appearance has changed, being told you have got this horrible illness cope with it then you have to get on with life.

You then go through the process of shock, anger, grieving for your old life if you were used to lots of outdoor activities and become photosensitive and eventually you will get to acceptance and enjoying your life living with Lupus in the back ground. My nick name changed to Madmagz and when I "go off on one" it is a case of "Madmagz's mouth is off again!"

I sincerely hope that you can get to a place where the lupus takes a back seat in your life, people have got used to me falling asleep - I have done it in pubs! As my flares go into remission the mouth calms down I hope that is encouraging for you

Chin up and take care.

it has taken me yrs, to realise im not losing my mind, i have since 2009, gone from being an easy going, understanding caring person, my personality, is the complete opposite now, i was diagnosed in 2009, after reading this site, i now know im not alone, vitamin b12 injections, have helped people, both mentally and physically, iv never been under the correct specialist, so have had nothing but warfarin, after suffering multiple clots, please look at other readers on this site, since taking b12, they have got their old life back, and restored energy, good luck kathie

Greetings! Today I get tested for lupus and rheumatoid arthritis, thus my searching the nett in the wee hours.

A few of you stated the relief of knowing WHAT'S wrong, that would be me. However, I do not intend on taking meds. Many here have discussed anger/emotional outbursts, though I did not see anything in regards to liver... The organ of emotions and anger. Cleaning the liver will help with anger, just as getting rid of anger will help the liver.

I thank you all for sharing - soon I'll know and do know, with or without lupus a clean liver and body will help anyone live longer and more happily.

Yeap!!!! I go through it often...and it comes out of nowhere...I'm starting to get irritated very easily by silly stuff!!! (Like someone asking a question they know the answer to (just an example)....and I'VE (NEVER) been this way before!

The lupus is starting to cause more inflammation and joint pain. I sleep more than ever!! I have a MAJOR loss of appetite and etc!!

Smh: Lupus is a very terrible disease to live with on a day to day basis.. And controlling it takes a great deal of discipline, patience and understanding!!! From yourself and the ppl that you love...who love you in return!!!

Just take it 1day at a time... And pray about it!!!

It will get better in someway!!

When you least expect it.

May The Lord Bless You In Every Way...EVERYDAY!!

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