How do you all cope with the depression that lupus brings ?

With lupus and the overwhelming fate it brings I become quite depressed some times. However I do find that when I'm well I'm not depressed but when something occurs like a small problem it drags me down where I cry a lot and feel like I just want a good hug I dont want to eat nor drink and I close my curtains and sit in my room this sounds bad and I have told my doctor to no avail I have since changed my doctor but have not managed to go yet

Would just like to know how all of you cope with your depression is there any coping methods (I don't like counseling) that you do any hobbies absolutely anything that helps get you out of the mess

Thanks for reading

Afia x

20 Replies

  • Hi metoyou, I have become more depressed as my disease has progressed. Like you I am fine when well. I don't get as down as you describe, but I do have feelings of,'what's the point!!!' My depression is more in the form of mood swings. My tolerance is very low, I seem to complain all the time and have a quick fuse. Like you, I don't want any counselling, this is my therapy, sharing with people like you. Hobbies is a good idea for distraction. The activities I loved were gardening, long walks with my dog, and card making. I can't do any of those now, but I do love my music. I will blast my music out loud and sing my head off. I am in the middle of nowhere, so don't have neighbours to consider. I suffer for it at the end of the day though. The reason why it lifts my mood is because I play all my old music, which I can relate to a happy, fun event in the past. If you are ill and in pain, when you lock yourself away, this is a rubbish idea. Even I can't. If you feel the new Dr is the way forward, then try and see them. Have a cyber hug from me. Xxx

  • Awww thanks and take my cyber hug back. I love just trying to distract myself if only I could when im depressed its so vicious that I just think of the reason I'm depressed an that makes it more worse I don't like eating or drinking when im down

    Overall my lupus is controlled I have other problems with urinating lots and that's getting to me alot as the feeling is always there that makes me depressed cause I can't solve the cause of the problem

    I also have brain fog with the lupus which in turn makes me forget things and am due an MRI scan on the brain to see if lupus has damaged it or something like that. All this along with my lupus and Hughes syndrome is far by to much to take in for a 19 year old I can't seem to accept it even though its been 2 years almost

    Thanks for your reply

    Really appreciate the help and its true the real counselling is here where others with lupus are experiencing the same problems s you are

    Hugs and Strength from me to you



  • To avoid getting too deep in self pity I tend to call my extremely self-centred friend for a chat. She's very funny, good hearted but so self-absorbed that we only talk about her, her life, her work - thank God she's not asking how I am, I'd go back to being depressed. This way I laugh and my mood lifts each time.

    For any rant I speak to my husband who has a very high threshold to noise, thankfully. He makes the right noises at the right times until I calm down, then continues to watch sport unaffected.

    But for people who understand what I'm going through, I come here on this forum.

    We all try to cope in our own way, I hope you'll find yours soon.

  • Hey Afia! When I was very ill I didn't want to get out of bed in the morning. I couldn't leave the house. I'd fall asleep all the time in the middle of the day and YES I needed to pee A LOT.

    I think the best thing to do is make plans with your friends. Yes you might need to cancel them but you need stuff to look forward to. Having things to look forward to brings you out of the fog and like you actually have to get up and get going. Maybe join some kind of sport (but ha this would have been the last thing I wanted to do when I was ill) or something that gives you more routine and structure. Routine is awesome and stuff to look forward to is awesome. Good luck dear <3 xxx

  • Hey Lemoncheese

    Can you discuss further about the peeing a lot as I'm going through that stage and can not handle it. Do you have any coping methods. Did you find out what caused it? Do you still suffer with it despite there being anything wrong ahh please enlighten me on this issue

    Thanks afia


  • Hey afia,

    I decided my peeing was habitual since I was on water reducing tablets a few years ago- though maybe I'm wrong and it's physical too!

    But I coped by going at every opportune moment, telling my teachers and lecturers that I might need to leave to go pee so I wasn't stressed about not being able to- and for a while I wore panty liners or even thicker things just so I felt confident enough not to rush to the toilet when I needed it just a little. This may sound embarrassing but it's a really worthwhile thing to do as it increases your confidence and willingness to try hold it for longer. It helped me anyway! I only get up once in the night to pee now anyway!

    Katie xx

  • Hey Lemoncheese & Metoyou

    I used to get up 3 or 4 times a night to "pee". About 2 years ago I stopped drinking diet soda, iced tea, kool aid and replaced them with water. Water with my lunch, water with my dinner and another bottle in the evening. I'm still getting up, but only 1 time a night! (Some nights not at all).

  • Hi Katie

    When you say habital do you mean kind of like a MInd thing? Cause when I know its there its more like yeah I have to go?

    Is that what you mean by habital

    Thanks afia

  • Hi Metoyou

    Might be worth talking to your new GP about your bladder. I had similar problems and was diagnosed after tests with interstitial cystitis. I 'm on drug treatment for it and have so improved. You might also benefit from help with the depression, I do get it when I'm inflammatory but not such strong symptoms as you. Reducing steroids can give it too and as you say coping with Lupus and the drugs is enough to deal with! I hope you feel better soon. X

  • Yes I get depressed and angry lupus is not easy to live with but always remember someone with lupus is not easy to live with either I so feel for my wife at times

  • I get very depressed and angry about having lupus. It is a good job that i live on my own as i have snapped peoples heads off. I spend a lot of my time on my own as i have no family only a brother who doesn't speak to me after we had an arguement. I don't think that i would be easy to live with as i can be very moody. Trying to get a job maybe it will get me out of the house.

  • Hi everyone,

    I have had lupus and polymyositis for four years now. Initially, I had counselling, struggled with coming to terms with this illness. However, after a couple of years, I learnt to pace myself and started to actually listen to my body. Instead of pushing myself, I now try and do only what I can cope with. Last year, I went on a course on how to cope with living with a chronic condition, this was helpful and offered some useful ideas/tips (it was called Expert Patient Programme). I also started swimming about 4 years ago, at the time of diagnosis as my consultant suggested as I could no longer walk very far. A year ago I started acquafit classes. These are only half an hour long but sufficient to get me out of the house, and feeling active, healthy and happy! I have made lots of friends through this route and I find the aqua not only puts a smile on my face but has helped me build strength as I have muscle weakness, particularly in hips and thighs (polymyositis).

    Looking back, I think I dealt with this illness the best I could under the circumstances. However, I was being supported by the professionals(GP, Consultant, counsellor, physio etc) so I learnt to cope but I honestly felt my husband struggled even more than me with my illness, as he could not come to terms with it. I felt I was coping, he was hurting and afraid t talk about it. Infact, he wanted to run a mile but knew he couldn't. Therefore, I see that his suffering was worse than mine! It's a shame partners are not supported as well as we are. I am grateful that we have reached a point where we both are now ok with it and try and carry on as positively and actively as we can. Naturally, quality of life changes but we cannot worry about what is not in our control or beat ourselves up over it!

    Renu xxx

  • Metoyou..I have been living with depression my entire life. I was on anti depressant for a year. Did not like and would not advise anyone to go on.. I do art projects, crafts, listen to music I love...go for walks in nature, even alone If I have to....that is my peace...just started picking up my stained glass again with a new project. Sometimes I am too depressed to do that and I just close the curtains and sleep too. I try to push myself out to the garage to work on and I also push myself to exercise. It's so hard sometimes...treat yourself somehow...I got a massage yesterday because I had a bad day. It was a foot health massage. Woman said I would sleep well because I told her I had a lot of nerve pain in my feet when the woman was working on them. You know what, I slept straight through for 7 hours for the first time in a long time!!! I think lack of a good night sleep with lupus patients really effects us more than we know...I really hope you find a way and feel's ok to muddle through it and wait for to pass too. I believe anyway.

  • Metoyou ...I would like to share something about the brain fog. Mine has eased up since I have been taking a digestive enzyme for two weeks. A gentleman studying natural care in a health food store near me is convinced brain fog, inflammatory disease is related to a leaky gut. We r losing all our minerals thru our gut leaking, which in turn makes us dizzy. I was terribly dizzy for 5 years on and off. MRI showed nothing wrong. Neurologist couldn't figure it out. Disciplines do not integrate their knowledge. Problem with doctors. I have had less brain fog and less dizziness. Not perfect yet, but boy do I feel better. My right ear swells sometimes from this lupus, that also may cause my dizziness. Research a little and see what u think. There r no side effects from this enzyme but maybe some gas... I still have other problems, but it is helping sort out my dizziness. This scared me the most with this disease. I thought I was damaging my brain too with it. I was also getting a lot of migraines, which have subsided since I have been also taking Natto k enzyme for sticky blood. Hope u feel better. Too young to feel so bad...

  • Hi there, I would also recommend getting your vitamin d levels checked as when this is low (most of us are) this can cause depression and make symptoms worse.

    For a while I had been taking quite high doses do vitamin d without mentioning it to my doctor. Last month they decided to check and it came back low even after self medicating. I have noticed my depression is much better nowadays than it used to be.

    I also take digestive enzymes when I remember along with acidophilus. I also started taking cononut oil and apple cider vinegar and garlic into my diet as these are anti fungal, anti viral and anti bacterial. I'm sure all this has hoped me. Also I try to drink lots of water.

    Earth clini is a great web site with lots of folk remedies and people's testimonies on how they worked for them. You can either look up remedies or illnesses and see what comes up. Interesting and natural.

    All the best x

  • Good to know... I noticed the positive effects of vitamin d as well. Wish I knew about this when I was younger. I have survived with less depression than normal through this long and cold winter because of vitamin d. My sister is also very low on d, and takes a supplement. Again, hereditary. I was doing the coconut oil, but my body could not digest it and it would make me feel very bloated. Apple cider vinegar is also good, hard to drink. I get bad indigestion when I drink a tablespoon of. I also eat a lot of garlic in my food. Good to know these all do something. I am sticking to the digestive enzymes as they are working for me. I will check out that website. There are so many out there today. Hard to know which to trust and look at..thanks for the info jacqueline121.

  • Here's another one that includes natural remedies along the lines that you've mentioned

  • Earth clinic I meant x

  • Have you tried going to a Christian Church? I have been on Coumadin for 12 years. I know what you are going through. I'm thankful to be alive and able to function. Try it, find a good Bible Church and start attending. Christian Love,


  • Hi

    I have had depression on and off for some years now. The initial episodes where reactive to my dads death from Motor Neurone Disease and other life experiences. A few years ago I found I was depressed for no apparent reason except it came with extreme exhaustion. Anyway I took time off work, antidepressants again and had some cognitive therapy. It did the job. it helped me feel better about me and to change the way I was thinking and eventually i got back to work. I am more aware of my negative ways and thoughts now and I try to stop them before I get too bad. It Turned out that that episode of depression was associated with my connective tissue disorder (possible SLE and or Myositis). It doesn't always work because it took another episode, which was the one where I realised it came on with my fatigue and that there was more to these new depressions, but it has a definite benefit just stopping me spiral down on a number of occasions.

    I realise counselling isn't for everyone but I would recommend giving one to one counselling a go. Otherwise get some info on cognitive therapy and try it out.

    It is good that you have changed your GP. I work in a GP practice and we are constantly screening for possible depression so we can offer help early. Don't wait go and see your new doctor, the majority are very understanding. Don't let yourself spiral down further!!!! Xxx

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