LUPUS UK
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Newly diagnosed, struggling to deal with it

how did people come to terms with their diagnosis? I'm only 23 and I'm really struggling to get my head around all of this.

I have gone from being your average 23 year old loving spending time with friends and enjoying life to not wanting to leave my house unless absolutely necessary. The red discoid marks all over my body have caused my self esteem and confidence to plummet.

I feel like a fraud sometimes because although I'm in a lot of pain I don't 'look ill'.

Right now medication isn't helping, if anything I'm feeling worse for it.

I just need to know that it does get better.

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When I got told I was the same but of a shock but when they get the Meds sorted it get a lot better and time to take it in

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Hi Athens

Sorry to read your struggling to cope with your lupus diagnosis. It will take time as you've had a shock and life as you've known it won't be the same but it will get better !. Hopefully the meds will start to work and you'll feel better . What have they started you on?. Being on this forum will help you a lot as you'll find your not alone. Lots of TLC and look out for Lou lambs posts as she's young like you. You might like to chat. Also there is a young lupus group you might like to join when you feel strong enough. Paul at lupus uk would give you the info about it.

Take care and keep us posted how you get on. X

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At first they started me on Hydroxychloroquine, it worked for a couple of weeks in the beginning but 14 months later it's not been any help. 6 weeks ago my consultant started me on Methotrexate but so far it's only made me feel worse. I'm sticking it out just now as I see my consultant in a couple of weeks so hopefully he'll have some answers.

Thank you, I'll definitely keep and eye out for Lou Lambs posts.

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Sorry Athens you are having problems finding the right treatment. I'm glad you see your Rheumy soon to talk about it. Let us know how you get on. Also a miss fg has been posting and she's a newly diagnosed youngster like you too. Good luck and take care. X

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When before I even found out, my world was a freaking mess. I wasn't the same woman I was before. I lost my job, my life, and myself. It was awful. I am not going to lie to you. It took my husband to cheat on me for me to realize I needed help. That was a year and a couple of months after my diagnosis.

I want you to know I am 21. I found out I have SLE when I was 18 and I was just diagnised with celiac this year.

It may be too soon, but you should think about seeing a therapist or psychologist. That really helped me rediscover myself. I don't where you live but I have found that CBD oil (cannabis oil with out the THC; does not cause the high feeling) has really helped me manage my joint pain. I started putting it into a vape and my pain starts to ease up. The sun and heat are my worst enemies.

You can always message me if you have questions. Even though I don't have issues with my skin, besides my cheeks and sometimes a rash, I am willing to help you with my secrets I have learned:)

Just remember, it is hard right now. You will have to mourn your old life. You can't live that life anymore but you can lice a better one. It is possible. You just have to find your new limits and when to say no. Also, stop caring so much about what other people think. You are sick. END OF STORY.

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Hello, Athens94. Welcome to the forum and I'm sure you'll find lots of support here from wonderful people. I know exactly what you're experiencing with the horrible rash all over you but you must believe IT WILL FADE. I've been there and at the time it's devastating but take the tablets, use the ointment and get out there with your friends. Wear loose linen trousers and floaty tops. They're fashionable now anyway. There's loads of good advice, hints and tips here and, best of all, it's great to know you're not the only one.

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It feels like it takes over your life but I believe for us all there comes a point where you decide to take back your life. Ok it's not going to be the same but you find a new normal and of course it's a real struggle sometimes and we all know that can be for anything from a day to a few months. Read the spoon theory and use this to educate the important people in your life. Plan your week and put the must do items at the top and don't worry about the things that can wait especially on an off day. Don't make too many arrangements as having to cancel will just make you feel bad. Join a local support group, not sure where you are located but lupus U.K. Have lots of local groups. I'm 4 years on now, I've given up work as I just couldn't cope, memory, lack of concentration, tiredness, hospital appointments etc I felt so bad every time I couldn't make it to work and over the last couple of years I was hardly ever there and each time I tried to go back I got to about ten hours in the week and ended up back in bed for weeks on end. I lost lots of friends and I have had to make an effort to find a new social circle and I now really enjoy what I have. I rarely go out at night as I'm really quite tired by mid afternoon but if I plan a night out then I plan rest time in the afternoon so that I can last. Basically it's just coping techniques you will learn but you need to be in the right frame of mind and determined to make changes. I also did a course recommended by my rheumatologist on lifestyle management, covered all of the above really. I can't say I feel better for not working but I feel less stressed as I'm no longer letting anyone down. My lupus still affects me the same as it always has but I can plan lots of rest which means I have more family time when everyone gets home from work and school. I'm definitely not bored either. If someone had told me that I had to be positive and make my own changes at the start of this journey I think I might have punched them lol but watch this space and you will hopefully follow this pattern in your own time. Basically you just learn to fit things in around your new normal. Don't let it take everything from you. Good luck xx

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Thank you! it really is nice to know that I'm not alone. I can relate a lot to what you have said, I'm a care assistant so I'm responsible for helping the elderly get up, washed and dressed in the mornings even though most mornings it's a struggle to even get myself up. I'm planning on going back to college next month which will hopefully be a lot less stressful.

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Hi Amy,

I posted almost exactly the same thing 2 days ago. I'm also 23 from England and diagnosed with lupus last month. Struggling to accept the diagnosis but people on here have been really supportive.

I'm also struggling with a rash at the moment which has been here for 6+ weeks but is fading with steroid ointment.

If you get any good advice on how to cope, please let me know. I feel like you and I are in the same boat at the moment so if you need to vent, drop me a message x

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wow, never thought I'd come across someone so similar to me. I've had a suspected diagnosis for about a year now but It's just starting to sink in and I'm just starting to realise what is really happening. It's good to know that there is a really strong supportive community here, it definitely helps!

I'll definitely pass along any tips I come across and likewise, if you need to vent about anything just fire me a message x

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Hi,

I think the way I dealt with mine, was the same way as I dealt with my sons autism/dyspraxia diagnosis.....we are the same people that we were before the label was attached....change the world for you, don't change yourself for the world (doctors advise on my son)

You say 'you don't look sick' yet you are covered in a rash, ....you wouldn't doubt someone with a migraine, so please never feel like a fraud. And don't be ashamed of something you have no control over. Would you judge someone on their skin? If someone did, then their opinion really doesn't count!

I'm double your age, but have had lupus since childhood (sle and dle), I was diagnosed aged 39.

It does get better, things won't ever be quite the same again, the medications take ages to break through. But I found quite a strange thing happened to me, the things I felt were important slipped away and I realized it's the smaller things in life that really count....in short, it's made me a better person. It will take a little while to sink in, but you can do this, you are stronger than you realise xx

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Hi Athens94,

Welcome to the LUPUS UK community forum. I'm really pleased to see that you've had some fantastic supportive comments from other members of the community already.

I'm sorry to hear that your treatment isn't currently working. I see from your comments that you've now been on Methotrexate for 6 weeks? This usually takes about three months before you feel the benefit, so it would be best if you can persist with it, but if you are unable to tolerate the side-effects make your consultant aware so that they can adjust the dose if necessary.

Our booklet, 'Lupus and the Skin' may be of interest to you. You can read and download it at lupusuk.org.uk/publications/. If the rashes are affecting your confidence, you might be interested in considering skin camouflage. There are services available to assist with this. You can learn more at lupusuk.org.uk/skin-camoufl...

If you are anywhere near London, you may also be interested in coming along to one of our support group meetings for young people (16-26) with lupus? You can find more information about these at lupusuk.org.uk/lupus-in-you...

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Hi Paul, everyone on here has been so helpful already, it makes such a difference.

I'm thinking of asking for the injection rather than the tablets as I've heard a few people say the side effects weren't as prominent with it but I'll see what my consultant suggests.

I'll definitely have a look through the booklet and unfortunately I'm not near London but if theres ever one in Scotland I'd definitely consider coming along.

Thank you :)

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Hi Athens,

This is a tough diagnosis to swallow, but with hope and support (and God if you're spiritual) you can get through this better thank you think.

Think of the fact that youre lucky to have a diagnosis, and how many people go years without being diagnosed and the frustration which comes along with that. Be thankful that so far, your MTX injection is providing a positive experience for you.

I am not taking away from the fact that Lupus isnt something anyone wants, but try and focus on the GOOD. Most Lupies will live a normal, full lifespan. Lupus can be very well controlled and remission is possible. Always have hope, always. We all support you in good days and in terrible ones!

If you ever need to vent, feel free to message me. I have had this condition for 8 years ...

Big hugs to you ... youre a SUPERSTAR!!

Jen

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Thank you so much for your lovely reply! It definitely makes me feel a bit more positive that I'm not alone and that there's always someone to turn to for advice/help on here.

I've just recently gone back to college as I'm determined that Lupus will not define me, it'll always be a part of me I can't deny that but it'll never be all that I am.

Wow, 8 years seems such a long time from my perspective, hope you are well :)

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