Depression and loniless

[Butt3rf1y]

Does anyone or😔 have you in the past gone through any forms of depression or loneliness due to being ill with SLE? If "yes"✔️ How did you overcome it or does it not go away?💟

[Sarah74]

Morning… that’s a big question. The answer for me is yes. I’m 49 and was diagnosed with lupus at 18 and I felt so alone there was no support groups at the time really and I was offered “formal” mental health support.

I actually formed a friendship with one of my docs who had looked after me in hospital but was no longer treating me as an outpatient… I can’t explain the support that gave me.. she was the only person who seemed to understand the complexities

Live changes and I moved… but have used different methods to cope, from therapy to lots of rest, to being kind to me, yoga and excercise health too ….

Most of my friends now “get it” but it’s taken years…

I also have a supportive father and a supportive partner … but again it took a lot of kissing frogs to find my princess 🥰🥰

I hope you find what works and helps you…

There’s no easy answer and some days I really struggle … ♥️

[Occasion99 in reply to Sarah74]

totally agree with everything you’ve said…wise words ,. I also was diagnosed a good while ago..35 years and am now approaching 60.

Good days and bad . It’s not easy but I try! Pilates , friends, the dog! All have helped. Just Ty and live day by day

Focus on what you CAN do and not on what you can’t 😊😊

[JCZW]

Hi Butt3rflySorry to hear how you are feeling.

I have suffered with depression and even felt like I couldn't go on anymore.

I decided to speak to my gp who referred me to the mental health nurse and social prescriber at the surgery also steps to wellbeing being who supported

Me for16 weeks on a one to one basis.

This helped enormously.

I still have days when I find it difficult to cope with how my body is attacking me.

At my hospital which specialise in Lupus they are trialing a clinical psychologist working alongside the rheumatologist and I've been lucky to b secure a place on this which begins in 2 weeks.

There is help out there please don't give up.

Xx

[CecilyParsley]

Hello, I think most people can relate to how you feel. Coping with the health problems that most cannot be seen, it is difficult for others to understand. I know some people are fortunate and have loyal friends and a supportive family but if you don’t it can be hard. Have you told your GP how you feel? There is help through one to one counselling and groups such as Mindfulness and antidepressants. The antidepressants took the edge off the despair for me personally but the Mindfulness was not for me. I found the Educacation Programme for Patients Course amazing ( EPP) . To meet others in my community suffering with chronic ill health and hear their stories and their coping mechanisms enlightening and many tears and giggles were exchanged.

The biggest support for me personally came from my hubby, a paid carer who has become the best friend and this wonderful community.

Life can be hard, miserable, painful but in time the grief from the abilities you lost will be replaced by the achievements you make. The hardest thing is being patient to enable the new you to emerge. We all have different coping mechanisms and I personally love my pottery classes l I am utterly useless but go for the laughs, the company and an escape from the house.

You are not alone. Take tine to find what support suits you best and in the meantime we are all here to support you. Be kind to yourself xx

[Sher78]

I was diagnosed very young and after undergoing a very scary time requiring emergency surgery and resulting in an 8 month hospital stay due to complications caused by lupus & my comorbidities, I recovered very well and managed brilliantly, with the odd blip here and there. Fast forward 17 years and I had a massive flare that left lasting damage and resulted in me having to give up work. we discovered that the lupus was affecting my CNS and I developed depression and psychosis (this was while I was still working and and is what resulted in me giving up work). Unfortunately, I lost the few friends I had (obviously from leaving work, out of sight, out of mind kind of thing, and many of my other friends maybe found it to much of an effort to have to come to me all the time and see me in such a state, in bed etc). I felt lost for a long time and was in a very dark place. What I found most difficult was more the fact that I was literally a shell of the person who I used to be and as well as the physical problems I had, I now had gone from being very intelligent and super articulate to someone who couldn't even string a sentence together. I was 33.

I had an excellent GP who was the one who originally noticed the change in me, ordered CT Scans, MRI's etc, got me seen by Psych, which did help, went on medications for depression and psychosis and also attended some counselling. This all helped me realise this was an affect of the lupus in my particular case and I learned to accept that things were going to be very different from now on. It took about a year for me to get out of the dark frame of mind I was in and being completely honest, warts and all with my nearest and dearest for that to happen. Yes, it scared them how low I was feeling, it scared me, and also made me realise that I couldn't always be the 'strong one' that held everything and everyone together, it was my turn to be helped. Fast forward 12 years, I'm still not working (to be honest, I can't see me being able to but it is what it is), still on my anti-psychs and anti-depressants, but the bad days (mentally) are few and far between, things seem to have gone back to being more physical problems now. My O/H and children (who are now adults but still live at home) all work during the day so I am home alone and it DOES get lonely but we have cats and guinea pigs that keep me busy and smiling. I spend a lot of time online (I have made a few friendships that way) and I have an aquaintance from when my son used to play kids football who comes and visits me every couple of months but aside from that, I don't socialise much with anyone other than my family. I have come to accept I am not the person I was years ago, but nor do I feel like a shell of myself anymore. I laugh and enjoy things again now, but I am also uncomfortable when I'm out of my comfort zone (away from home or around other people who I am not familiar with, whereas before I was the life and soul of the party). Yes, I get lonely, but I accept things for what they are and am relatively happy. I don't focus on what I can longer do, but appreciate what I CAN do and the people I have in my life. Take each day as it comes and good luck. Sorry for the essay.

[nottypical]

Not depressed but really annoyed about not being able to do things I used to be able to do.

[Lucylou72]

Hi 👋 sorry to hear you feel this way too. I struggle with loneliness and feelings of sadness. I was only given the sle lupus and sjogrens diagnosis in Dec 22 after much struggling to find out the cause and them ruling out things first. I also have fibromyalgia and feel so tired most of the time and often wonder if I'd be able to physically maintain being a good friend. I often wish there was a local lupus group where I could meet people who deal with the same issues for a coffee and nice chats. I live alone with my teenage son and have 2 adult children who have fled the 🪹 nest. It must be quite common to feel like this because of our struggles. I know it can be really hard and each day I say out loud to myself small things that I am grateful for and realise how important those small things really are to my life. I wish you all the best xx

[StriatedCaracara in reply to Lucylou72]

Some of the local groups meet online. If we contact Lupus UK they can advise on options.

[Oldbits]

Hi, hubbie had anxiety and depression after his diagnosis. Not the same illness as you but it was a life changing illness. I found him a councellor that dealt with life changing illness and he had telephone appointments with her and it helped him come to terms with it all along with anxiety medication (short term for about 6 months) we had to pay but it was worth it. It costs about £50 for an hours councelling once a fortnight. This might not be much help. Your not alone xx

[Treetop33]

Yes, inevitably so, because it's hard to come to terms with a life limiting illness. Forums like this help. I have been in therapy for a few years now. I think I have some balance with it all, but I do get very frustrated about being excluded from life because I'm tired, ill, or it's too sunny etc etc.

[Spanielmadlady]

It is very hard living with chronic illness especially if you have family or friends who don't "get it" . Loneliness isn't something i suffer from as I'm happy with my own company but i can appreciate how others suffer big time with it.i knit and crochet for charity and make gifts for the few genuine friends who have remained and supported me.i also have the dogs who like others whos familiy have flown the nest or are out at work are company and non judgemental support.ive also made some good friends on here too who are worth their weight in gold as they "get it" when things are a struggle..like now as the heatwave has beaten me and my breathing has deteriorated. There is still fun and pleasure to be had ...youve just got to find a different way of doing things now like rockin floppy hats and maxi dresses in order to go outside for 5 minutes..as others have said acceptance plays a big part in it all too but I'm sure you will find your balance soon .big hug x SML x 🤗

[Poshcards]

I still find it difficult, we retired to a different part of England, a lot of my friends soon drifted away and now because of covid I am virtually still shielding and dont see anybody exceot my hubby who is my 24/7 carer xx

[Butt3rf1y in reply to Poshcards]

May God make it easy for all of us during our hard times in our lives 🤲

[MusicalFurbaby]

Oh yes…frequently. I feel down about what I have lost due to this blessed illness, and the lack of control and predictability I currently have in my life. At my worst a couple of years ago, I became suicidal, and I found that anti-depressants took the edge off the worst of it. I was still down, but not sobbing every day. I still get down, especially during flares, when the pain is uncontrollable, or when I don’t sleep. I feel very lonely as others do on this forum, but I have a couple of close friends with other AI diseases, and they get it. Things that currently help me: chocolate, my furbaby, supportive partner, faith, music, writing, cups of tea, honesty (the less filtered the better), and ALL the self-care including cutting myself some slack. I hope you find light at the end of the tunnel soon. 💚🌻🌈

[Snoopdoggy]

Depression is part of SLE I have been living with lupus for decades. I got told I had SLE in 1977 although I had had health issues all through my childhood. I have Scleroderma / crest overlap also. I still have depresssion and take antidepressants I was told I have bipolar type 2 . Living with these illnesses depression is part of it. I don’t think there is a straight answer . I think we all react differently to coping with all this. I’ve tried therapy it didn’t work. I try to stay positive but if in a lot of pain and problems it’s very hard I try to keep my hands busy doing a craft ie crochet or hobby helps. Also get out and get fresh air in your lungs. Trying reading a good book can also help. Do something you enjoy meet a friend for coffee. Meditation also good. 🤗

[BonnyB]

Yes. I've a husband a 4 kids and spend most of my time thinking why can't I just have a minutes peace?! 🤣. Then this dark cloud comes over me, I feel so sad, so lonely and so misunderstood.

After a few years of this I've realised it's because I feel like I'm in this on my own. I feel like nobody else really, in my family or friends understands my illness and the impact it has on me. Or the changes I have to make to prevent flares. The compromises I have to make.

I'm not saying I'm not cared for as I'm lucky to have to loving husband and caring children but I know they don't fully understand the illness or choose not to as it scares them. I think this makes me feel lonely and isolated.

That's where this lovely lot on here help x

[Sher78 in reply to BonnyB]

I think unless you actually have a chronic illness, you just don't get it. My physio once said to me "When you're having a good day, really go for it". She couldn't understand why I said that was a really stupid thing to say as by doing that it would absolutely knock me out for at least a week afterwards. They don't understand that for some of us it's all about pacing ourselves. My original diagnosing rheumy (who happened to be a lupus specialist) even said to me "Even the greatest consultant in the world will never understand your illness as much as you; they have simply STUDIED it, you HAVE it".

[Butt3rf1y in reply to Sher78]

I agree 💯 only the one who experiences it really know what it's like and hopefully how best to deal with it 🌈

[Butt3rf1y in reply to BonnyB]

You're right💖 it helps to able to discuss the things you are finding difficult with others who are either going through a similar circumstance or have in the past🤗

[Sher78 in reply to Butt3rf1y]

You will get there my lovely, it just takes time unfortunately. Don't give up hope, better days will come.

[Butt3rf1y]

😭I didn't expect so much love and care from so many people 🥰 thank you all 😚❣️