Young and active autoimmune condition?

[IWTGO]

I'm 24 and strugglig with the effects of lupus and sjogren's, and also depression and anxiety. I have been told that I have to slow down and let go of my dreams, but I can't. Welfare is not an option - there must be a way to puzzle the pieces. I was wondering if there is anyone out there who feels somewhat the same, and wants to go on a journey with me to figure this sh*t out haha? I believe that the things that work on SLE would have a positive effect on many other autoimmune conditions too, so my only criteria is that you struggle with an autoimmune condition, severe fatigue and want to give 100% to better your life. Find a way to make life feel okay and worth it. Living, not just surviving. I'm thinking of "study and try out" approch, while giving emotional support and discussing outcomes.

[Hidden]

I think in some ways it’s easier not knowing that we have things wrong. At your age and stage I am pretty sure I’d had autoimmunity since I was a child (Sjögren’s, Hashimoto’s, alopecia areata and eczema /Psoriasis) but because it was just my normal state of health - the only state I’d known - I carried on with my life regardless. I did have to have time off my studies and was often thought lazy, had no truck with partying or all night entertainment, struggled with excess booze, smoked but got sicker, ate badly and paid the price.

But somehow I got my degree and postgrad, travelled, had 3 kids, a career as a self employed artist. I looked fairly awful with bald patches, facial rashes, many allergies including anaphylaxis, infections galore. But I just assumed it was bad luck - never realised that there was an underlying civil war going on within my immune system.

Until both my parents died suddenly in the run up to my menopause - and then wham! Along came RA on top of the lifetime of undiagnosed stuff.

So maybe your awareness of what is wrong could, as you say, be useful in researching and trying out stuff such as lifestyle adaptions, food, targeted exercise etc - learning more about autoimmunity and contributing to related research even? Please don’t let your conditions stop you from living life to the fullest you can possibly manage. When I am flaring and feel sorry for myself I think of Stephen Hawking and what he managed despite his motor neurone disease. And then I try to focus on my creative ambitions again. It seems to work although my achievements are always more to do with quality over quantity lol 😴🤯😎😊

[IWTGO in reply to Hidden]

I'm amazed by how much you succeeded completing, and I hope I can be just as strong somehow

[Hidden in reply to IWTGO]

Aww that’s sweet of you but I married a gem and slept and grumped through a lot of it so don’t start thinking I’m autoimmune superwoman please! As I say sometimes ignorance is ..well not bliss..but just ignorance 😴😴😉🤷🏼‍♀️😄

[Jopopsmilo1]

Take time now slow down keep your dreams get a little better a little stronger sometimes we have to slowdown take a-look around work out what works and build from that

[IWTGO in reply to Jopopsmilo1]

Thank you

[Melba1]

You shouldn’t be told to let go of your dreams. You may have to adapt them a little to fit in with autoimmunity but you can still dream, be you and have a full satisfying life with dreams and achievements.

Very hard at your age but if you get the medication right, be careful with pacing, diet etc these conditions can often go into a much quieter phase when you can live a much more normal life.

I think you’ve got a great attitude to not giving in and if you balance that with being kind to yourself and accepting some changes then you can improve your life (easy for me to say and I haven’t really accepted all the changes myself 🙄) and follow those dreams. Although it seems that lupus and Sjögrens just take things away from us, I think they give to us in some ways too, remember how much stronger you are from having to fight this at such a young age.

Good luck and I hope you go into a period of remission soon

X

[IWTGO in reply to Melba1]

I try to take care of myself the best I can, but there are practical issues that kill motivation sometimes. Depression hits hard and no therapist or drug has been able to give relief. All I know is that I can't feel like this for a lifetime, something has to change, even though I debate how the balanced solution looks like.

[Melba1 in reply to IWTGO]

I think we’ve all had times when it feels overwhelming but if you get the medication right you can feel quite well again.

What meds are you on?

I’ve had a really bad year with the lupus but after steroids, rituximab and now methotrexate I’m feeling so much better. There were times though that I doubted I ever would.

I wasn’t diagnosed until my 30s though. It’s so much harder for you to accept the changes in your 20s.

Can you speak to your rheumatologist about how you feel? There is often more support available if you tell them how bad you feel

X

[Hidden in reply to IWTGO]

Don’t expect too much from yourself - just seize the good days or hours whenever you have them for some meditation or fresh air and try and spoil yourself rotten through the bad days.

This is how I manage anyway. I think it’s the wider expectations of family and friends and society that we feel we are failing to live up to and which can be the biggest hurdle we all face.

Just keep telling yourself you’re an autoimmune warrior and need a lot of rest, sleep and treats to be able to build up your armour and special autoimmune weaponry X

[IWTGO in reply to Hidden]

I try hard to do that, but I have to work almost all my waking hours. I'm a student in a difficult field, but also a field that I love and want to work in. No matter how much I rest, I'm equally exhausted - so I often feel there is no point in even trying. Sleep only influences degree of painful emotions and brain spin. I'm also scared of allowing myself to rest and feel good, because once I start doing that it gets even more clear how painful it is pushing myself to my limits, and I have to battle a lot of thoughts to get my work done. It's easier to stay diciplined. My only options to take care of my body are to give up on my work or find a way to get enough energy to complete it. This is really hard for me because of how I was raised and how I think in general, and despite how much I try to change my thinking - no success yet. I wish I could find peace with less, but to me, less means being left by everyone I love and having no family, having a job I hate after all that I've sacrificed already, losing trust in myself and self respect and maybe even death. And my work is slipping. Hence the depression. I'm so exhausted that there are no words for it anymore. I'm young, but autoimmune conditions are nothing new to me. I see no other option than to find a solution to all of this.

[Hidden in reply to IWTGO]

I can’t really grasp the problems you describe because I don’t know anything about you or your circumstances. My three sons are all similar age to you in full time study, internship and challenging responsible work. So I can say that flexibility and options seem to be much less clear for your generation than they were for mine - it seems much more a case of all or nothing.

But all I would say is that the harder you push yourself physically now - the more you will know it later. I can say this because I have never slept much at all either and feel the mental and physical burden much more keenly now as I age.

But then, having watched the bbc film, “Hawking” the other day - he pushed himself extremely hard, believing he hadn’t long to achieve his goals - and he lived and continued to achieve right up a ripe old age - longer than any of my folks by far. Although they achieved a great deal too I have to say, despite poor mental and physical health

So actually I’m really minded to agree that you’re right to push to achieve all you want to. But I still can’t see why you shouldn’t spoil yourself rotten at frequent intervals along the way. Maybe now is the right time for a longer interval and you might ask your place of study for time off on grounds of desperately needing a rest to find some counselling and regather. There’s no harm and hopefully much good in regathering when your body and mind are clearly telling you this is essential?

[IWTGO in reply to Hidden]

Thank you for your response. I agree with that I could becoming better at spoiling myself and focusing on enjoying it. I have taken time off my studies on a regular basis, not because I wanted, but because I had to. That has resulted in very little money and more severe depressions. I have very little support from family, which also makes it harder. I've seen counselor after counselor, but nothing has really worked. I can't find the one counselor who can tell me something I don't already know or can reprogram my difficult brain. I'm getting myself another doctor's appointment - don't really know why, but I have to do something. We'll see.

[Hidden in reply to IWTGO]

Well I’m sending you lots of loving and supportive vibes to try and make up for a tiny bit of what you should be but clearly aren’t getting from your family. I strongly suspect you will get through it all and be very much the stronger for it - but I also realise it’s been and is going to be tough. Just keep telling yourself that what doesn’t break us makes us stronger and all that blarny. Meanwhile I really hope your GP can help in some way that you’re not anticipating🤞🏽X

[Hidden in reply to Hidden]

Ps and on a lighter note - you think you’ve got problems but with my early demise genes - I’ve only got about ten years left to win the Turner Prize!! 🤷🏼‍♀️😎X

[IWTGO in reply to Hidden]

Really, thank you for caring. I do hope you're right and I'm going to do my best, that's for sure. Haha, and I wish you good luck winning the Turner Prize

[Hidden in reply to IWTGO]

Well my ambition is about as far from being realised as my chances are of becoming young and slender lol but where there’s hope...?! And failing the Turner Prize there’s always my young ones and you to carry the torch so I’ll live vicariously! Xx

[baekhyunkitti]

hello! I am 23 years old and I also had a difficult time coming into terms with my new autoimmune condition :/ even more so when it has worsen and now I do chemo treatments to hopefully put it into remission...

[Chanpreet_Walia LUPUS UK]

Hi IWTGO,

Firstly, don't give up on your dreams! You sound very hard working and ambitious to get to your end goal. It is important to ensure you reach it but without pushing yourself too hard. Stress is an important trigger of lupus - meditating for just 10 minutes a day can help relieve any stress and anxiety that you may have. If you haven't already, please read our blog article on stress management and relaxation here: lupusuk.org.uk/stress-manag...

It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety. We recently published a blog article on ‘coping with depression and anxiety’ which you may like to read: lupusuk.org.uk/coping-with-...

If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail]

Please keep us updated, wishing you all the best.

[IWTGO in reply to Chanpreet_Walia]

Thank you for the links