I have been really struggling recently, and I think it’s a mix between my SLE and my mental health surrounding my illness.
I am only 20 years old and I feel as though my life consists of different pills and keeping an eye on my health constantly and I’m struggling with it.
I was diagnosed in December last year and ever since I feel like it’s all been down hill, I feel Unwell all the time and I have had lots of different medications such as methotrexate which helped for a while until I had to stop due to my blood platelets being to low to then restarting them but I was so ill whilst taking them so now I need to take hydrochloquine (not sure if that’s spelt correctly) which did not agree with me at all when I took it before.
I had an appointment with my specialist last week and to be honest I felt as though they just dismissed everything I was saying, I’ve had so many issues regarding my lupus and I feel like I’m getting no support.
I used to be a care assistant and I had to leave my job because I just wasn’t well enough for it, and now I’m just stuck in the house all the time and it’s actually quite depressing. Everybody thinks I’m living a great life not working and getting to stay home with my daughter but it’s not great, my house has just been put to the side completely, I have a huge build of washing to do and I think it’s cause I’m struggling both emotionally and physically.
to be perfectly honest because I’m not working I’m relying on benefits and I struggle to do the whole day out kinda things because I simply cant afford to do it, as stupid as it sounds, I can barely afford petrol for my car to drive to simple places.
I’m sorry for the long post, but I just wondered if anyone else really struggled mentally whilst having an illness like this? Or If I was just over exaggerating
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Lioness12267
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Please be kind to yourself and do all the things (low cost) that help you feel better emotionally. Many of us will have experienced mental health issues either due to the impact of the condition or related to it. Do you have someone, including friends and family you can talk to? There is no shame in letting someone know how you feel. Even if only this forum, they are soooo understanding and supportive. Please, I urge you to let your doctors know how low you feel & how hard you are finding this - asking for help is always hard, but definitely helps. It is very disheartening if you feel dismissed or that no-one is taking your concerns seriously. Stay strong, talk, write the feelings down and ask for some support ... virtual hugs, 🤗🤗🤗 x
Thank you for your reply I am starting to struggle with my tiredness a lot, which I believe is part of my mental health towards my illness but also because I have just been told today by my GP that I have shingles to now and I know it’s a stupid thing to be upset about but it just feels as though it’s one thing after another which she has told me that this will really affect my energy levels too.
I have tried to talk to family but they do try be supportive but they don’t understand at the same time, I don’t think they realise how much I’m really struggling just now. Thank you for your reply again
Shingles alone is just miserable, and you will feel tired ... have they offered anti-virals for this, if caught early it can really help reduce the impact of shingles....take time for yourself, rest - when you can, tackle things in small "bite sized" chunks, and praise yourself for even small tasks achieved ... pacing is everything (the big risk is feeling a wee bit better & going at it at 100 miles an hour, just to feel awful and worse the next day.😂.... Much of the advice offered sounds good & think about whether counselling - having someone who isn't family be there just for you & listen & understand. You may even be able to access via GP, for a fixed number of sessions free of charge. .. It is still early days in terms of your diagnosis, and it does take time to come to terms with .... you are right, sometimes family are oh so supportive and want to help ... but can't understand. They will have their own worries for you, maybe ask for some practical help instead .... thinking of you, take care, 🤗🤗🤗
It has been miserable! It literally feels like my skin is burning. I was given anti-viral meds to help so I’m really hoping it clears really quick because it is really affecting my energy levels. My daughter starts school on Tuesday and I’m struggling to give her fun days before starting because I just want to sit/sleep all day because I’m so tired and exhausted, even the thought of actually just getting ready sounds draining
I used to go to counselling when I was younger and I found it really difficult to open up, I just never really took to it very well at all but it might be worth trying it again
Sorry to hear you at a low point...but things will get better in time, you could if you have energy in the mornings maybe find a park & let the little one around while you find a seat & relax before it gets to hot. Doctors really don't understand how Lupus can take over & stop us from functioning like other people.Stay safe
I’m sorry to hear you’re feeling like this. Having a illness that can’t be cured is a lot to make peace with mentally and obviously physically.
Regarding your house have you seen The Organised Mum Method? If not google it and maybe follow her on social media. It is a method that will help you get on top of things and in turn will give your morale and self esteem a boost. It’s something you can learn to do in say 10 min chunks of that is all your health will allow on a given day rather than feel totally overwhelmed.
Maybe also ask your doctor to refer you for counselling as talking it through might be a good start for you as you sound very alone with this.
Also come here any time to ask questions or off load.
Hi, thanks for replying Yeah I actually used to follow the organised mum method and it really helped me a lot! I used to have the app and it gave me a lot of satisfaction ticking things off I had done but I had to get a new phone and I just have inch gotten around to purchasing the app again but it’s definitely something I’d love to do again.
You shouldn’t have to repurchase it if download it again and log in with your original details? Good luck I hope you get back into the swing of it as I know that when things get on top of us it makes our health even worse. Take care x
Hi Lioness, you are definitely not exaggerating, and it’s definitely not just you. Most of us on this forum experience mental health issues secondary to chronic illness—I certainly do. Having your life revolve around illness feels insular and depressing, not to mention monotonous. I feel your pain; I am in my 40s, have been sick for most of my life and it started from a young age too. It doesn’t seem fair that some of us get so sick, at so young an age, and the rest of the planet just gets to carry on with their lives!
I encourage you to post on here as often as you want to. Get support for what you’re experiencing, and remember you don’t have to do this alone. Do nice things for yourself—never underestimate the power of simple self-care things. And be nice to yourself—some days are just going to suck, and all we can do is keep breathing and hope tomorrow will be better. You never know when things are going to turn a corner. It sounds cliched, but it’s true! Take care x 🌻🌈
My heart goes out to you. You are so young and stuck at home and ill, it’s no wonder you are struggling. Please let your GP know how you are feeling. There is help out there. I had counselling again earlier this year because I felt overwhelmed and it really helped. There are also all sorts of groups available, like Mindfulness, Tai Chi , stress management. As for the housework and laundry, do you have a bestie or family member who will come and help you until you feel stronger? I know many of us have had to resort to that after becoming overwhelmed by things. Don’t beat yourself up you are doing the very best you can for now. Big Cwtches, it can and will get better xx
Well done for being brave and reaching out. I think many many of us here have mental health issues that come hand in hand with struggling with a chronic illness ( & life!) It feels like it’ll never get better & it’s hard to see how life will ever be normal again . It’s early days for you but with a bit of figuring what works for you and little one, a bit of compromise and sussing out what’s YOUR priority ( & not what everyone else thinks it is ) you will find your new normal. Accept any help offered and though it’s hard ASK for help from those near you there’s no shame in it.
It does get better & it’s a big step just saying but it “out loud.” Hang on in there xx
Hello Lioness. I know it’s hard and a lot to deal with at such a young age. I was diagnosed last Oct after Covid at 50. I’ve been in and out of hospital several times this year. Was given a 50/50 chance of making it through the night, plus lots of outpatients appointments and I haven’t worked for 8 months. I find it hard to explain to my family how I am feeling and struggling with SLE. It’s had an affect on my mental health, but sometimes it’s just too hard to speak to people, even my husband how I am feeling and how much of an effort it takes me to just walk short distances, let alone do any housework. On numerous occasions I have just broken down in my bedroom and cried my eyes out.
Posting on this forum has helped, as there are so many of us that can relate to how you are feeling and what you are doing though. We all support each other and that can make a huge difference. Try and keep your chin up. We are all here for each other.
Hi, thanks for your reply, Aww I’m so sorry to hear that! That must have been so scary!
I haven’t been able to work either for around 5/6 months and I’m struggling with not working. My days literally consist of playing with my daughter or taking her to nursery. I have no routine and I feel like I need it, do you ever struggle with routine with not working?
I’ve had breakdowns as well because I just can’t cope with it, my partner is helpful and helps clean up and do washing etc. but I feel bad sometimes because it’s so hard to explain how hard it really is for me sometimes
This forum has really helped me and make me feel not so alone in this, thanks again so much for your reply
Morning Lioness. I do struggle without my routine of working and yes it is hard, and my work colleagues did say that it must be nice not working, but they don’t understand how hard it is. The hardest part for me at the moment, is the amount of tablets I am taking 23 a day spread out at different times 😢😢 When I take my first lot at 8am, I just want to cry, knowing my life evolves around tablets and the alarm going off on my watch to remind me to take them 😢😢
We have to stay positive and we will get through it. Us Lupus suffers are quite resilient. If you need to chat, feel free to message me privately for support.
Please don’t worry about writing a long post – sometimes the process of writing it all down can help.
As other members have mentioned, the impact of a chronic illness on a person’s mental health can be profound and difficult to deal with. LUPUS UK have support groups around the UK, and also have trained telephone Contacts that we can put you in touch with – the Contacts and the volunteers who run the groups all either have a lupus diagnosis or care for someone who does.
If you would like to email me at alida@lupusuk.org.uk, or call me at our national office – 01708 731251, I’d be happy to have a chat about how we can support you.
In the meantime, we have produced a leaflet in relation to lupus and depression/mental health – which you can find at the link below. There are details in it of organisations who may be able to help – and I have also added a link to a blog article on our website which may be useful:
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I am starting to struggle with my tiredness a lot, which I believe is part of my mental health towards my illness but also because I have just been told today by my GP that I have shingles to now and I know it’s a stupid thing to be upset about but it just feels as though it’s one thing after another which she has told me that this will really affect my energy levels too. 
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