New to the group so hello I'm 33 and have been recently diagnosed with rheumatoid arthritis and lupus. I was only diagnosed with the additional lupus last week and I'm still getting my head around things. It has made a lot of sense.
I've been on hydroxychloroquine since March for rheumatoid but they have reduced this to add in methotrexate I know it can take a while to get into your system but I'm back to the start with my symptoms.
I'm struggling with speaking to my friends and family and expressing how I am feeling and how my symptoms are effecting me, I'm a really active person and lots of my socialising comes through exercise activities which have had to reduce and feel like I'm missing out and loosing part of me as a person.
I just feel a little lost and don't know who to turn too, I've informed my work who don't really know anything about it. I do do a bit of a stressful job and know this adds to my symptoms again don't know how to approach them to explain this as feel like I'm just moaning or causing a fuss.
Basically this has all knocked me and changed a lot but I'm good at hiding it well but as it seems to be getting worse before it gets better I'm drained trying to hide it.
If anyone has any suggestions on explaining to family friends employer without sounding like I'm just moaning I would love some advice 🙏 or do I just crack on and hope the new medication is effective and can keep masking things hehe I feel different but expressing that is very strange for me
Thanks even if you just read this 💜
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Sunshine634
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You are not unusual in feeling the way you do. Why don’t you contact both the Lupus & NRAS helplines.They have more of an overview than individual members when you are at the beginning of a new diagnosis. .. ,plus very good literature that is helpful when you need to get your employer to understand your present situation.I say ‘present’ as Lupus is all new to you….& hopefully things will become easier as your treatment starts to work.
I have been diagnosed with RA 20+ years,& back then I could never have envisaged how treatments & medications would have improved. Research is constantly improving treatment for all auto immune diseases, so give your Lupus diagnosis a bit of time & hopefully you will start to see the wood for the trees.
As for explaining to family & friends…tbh that is an uphill journey. Eventually I just said “I’ll explain when I understand myself”so don’t try to be superwoman to ‘keep up’ …..because all AI diseases don’t have one explanation that explains all. …. I didn’ t have HU to refer to back then…so I’m sure you will get more helpful suggestions from members here.
Things will get better…, however it will take time…so don’t beat yourself up…..just accept you will soon get to a better place……try to look forward to that.
Sometimes meds help, sometimes they don’t (I’ve had lots of adverse reactions, so it’s all trial & error); In my experience, a long, drawn out, tiresome journey…..I’m a mask wearer too 🥳, as many of us are xx
Lupus has drastically affected my sporty, exercise filled, busy, active life & dictates all that I do, but it’s not well controlled due to my problems with the usual meds given. Might be very different for you as it is for others …..
My Hubby has RA, after several years of trying various meds he’s currently having effective treatment with Rituximab IV infusions (Biologic) + DMARDs. At 62, he’s a bit older than you but he still works part-time and leads an active life.
AgedCrone gives some sensible suggestions x
Give out information leaflets to your friends & family, let them read up on it for themselves - some will ‘get it’ & some won’t! Direct them to all the appropriate websites…. Lupus UK have specific booklets for your employers & for you as an employee. Debbie_kinsey & michaellasmith are both extremely helpful & supportive ….
I’ve found Lupus UK to be a brilliant source of help, advice, information & camaraderie - your’re definitely not alone 🤗
You’ll probably get some well-meaning, useless words of ‘advice’ from friends & family which are meant with the best intentions but aren’t helpful at all! Unfortunately only those that suffer as you do can truly understand, also some Rheum Drs/Nurses ‘get it’ & are very knowledgeable & empathic.
Welcome to the forum. It's a really great place to share experiences, ask for tips, or just read about other people's experiences - you are definitely not alone.
It can be really overwhelming to get a new diagnosis and new treatments, and work out what that means for your life, as well as trying to get other people around you to understand what can often be an invisible illness.
As others have said, at Lupus UK we have some different resources which may help with some of this, and can also signpost you to other placs where you can get support. I'm wary of giving you too much at once, as I know that can be difficult when you're exhausted or just feeling like your cup is too full! So I'll just link a few things below related to what you've said in your post, but please feel free to reply to me here or email me (Debbie@lupusuk.org.uk) if you'd like me to expand on anything or you have any questions. We're also happy to chat on the phone if you prefer (helpline open 9-5, Mon-Fri: 01708 731251).
- All this is understandably overwhelming. But you don't have to deal with that overwhelm or the figuring things out alone. If you'd like mental health or emotional support, you can find a list of NHS services here: nhs.uk/nhs-services/mental-... . There is also The Wren Project who are set up specifically for people with autoimmune conditions: wrenproject.org/
- As well as the forum, if you'd like to connect with other people with lupus, we have some regional peer support groups and Contacts (people with lupus who are happy for you to ring them for a chat). If this is something you would be interested in, let me know & I can find the group nearest to you. Sometimes it can really help to talk to people who may understand what you're going through.
- We have this booklet about working this lupus you may find helpful, as it includes tips from other people & examples of reasonable adjustments people have: lupusuk.org.uk/wp-content/u...
- If your employer would like more information, then we also have a similar booklet for them: lupusuk.org.uk/wp-content/u...
- It's not on our website, but we have some great leaflets called "Someone You Know May Have Lupus" which provide a summary of what lupus is and how it can impact people. If you would find these useful to give to anyone, just send me your address & I can pop some in the post for you.
- We also have some videos on our YouTube channel which some people find useful to share with others to help them understand. In the 'popular videos' on the homepage there are a few short general ones, like the "what is lupus" and the "someone you know may have lupus" ones: youtube.com/lupusukofficial
I hope that's enough to get started with. If there's anything else you want or need, please do get in touch with me or with any of the Lupus UK team.
Thank you so much Debbie that's all extremely helpful, I will definitely work my way through all that information and see what is best for me, honestly thank you so much!! I'm sure I will be in touch
Hello, I’m new to the forum today but have had the diagnosis for a few years. Just wanted to reply as being outdoors & exercise was and still is soooo important to me. Think surfing, distance running & climbing. Don’t fret, there are so many medications and options, plus once you are educated on the options for you, you can make a measured decision and learn how to manage it your way, for your life & loves.
I’ve found that healthcare professionals respond differently and good ones ask about what is important to you in your life and what your priorities are. They can then better advise you about options given side effects. If they don’t ask, I usually try to explain.
I’ve still got a way to go with my lupus journey, but I do wonder if it’s made me prioritise and be more selective in my life. Plus it helps to clarify what matters and what doesn’t. Anyway, positive vibes from me to you. It is bound to be daunting so get all the help you need as you adjust to the news. I buried my head in the sand for ages and didn’t realise how much help is available, which isn’t an approach I’d recommend! 😆
There’s joy & vitality the other side of a diagnosis, it’s just different ☺️
Thank you for your positivity I've never been a dweller but somehow this has knocked me back a little.
It's all very new and we are all very adaptable. Everyone has been so helpful with the resources and suggestions I already feel happier than I did when I wrote that post 😊
Thank you for the advice on the professional side to be honest I haven't been asked anything I was just told this is what your symptoms suggest and your bloods confirm it but at least now I know!
You're not alone Sunshine 🤗When I was diagnosed in 2017 I'd never even heard of lupus 😲The best way I found to explain to friends and family was through the spoon theory..it's a talk by a lady with lupus which explains the fatigue etc and how much more effort it takes for us to do everyday tasks. If you Google Spoon theory you'll find it easily enough. Now when my daughter's ask how I am I tell them "I'm low on spoons today" and they understand.. I find it easier than saying how I'm actually feeling..as in ill.You've come to the best place..you'll discover all about living with lupus and you'll be educated and supported here. You can post anytime and someone will always respond. There's no such thing as a stupid question so don't hesitate to ask us. We all understand the challenges of living a Lupie life..you're among friends 💜🌈🦋xx
That's so kind of you I'm so happy I decided to post 😊 Spoon theory now I will have to get looking at that!! That's also a new fear what happens when I want to start a family 🤷🏼 cross that bridge when we get there I guess
Thank you for your positive words and being so lovely xx
I'm really glad that you have posted this as the replies you have been given have been a great help!I was diagnosed with MCTD 16 months ago, after years of feeling unwell. During this time i was told I had anxiety, that it was menopause ( even though I'd had early menopause 30 years ago, I'm now 62), depression and even that it was my age and would just have to accept it...
I eventually paid to go private and my rheumatologist was great, but since then I have only seen him once, despite trying to contact him at the hospital. I was due to see him last September, but heard nothing, I guess this us due to the backlog after covid.
I feel like you I just get up everyday and get through it. Some days are good some are bad. My GP has never discussed the diagnosis with me, even though I have developed other symptoms. In fact, I've not had a face to face appointment, always on line and yes, they have put them down to my age, even though i have asked if they could be linked to MCTD.
I feel totally abandoned, its as if I've been told what it is, but it's not that serious. My OH have never heard if it, though I have to admit, I doubt there is not much they can do and, because I look 'well' I don't want people around to see me as a moaner, so I never say how I'm feeling.
I have paid privately to go see my rheumatologist and have an appointment today. I've thought about cancelling the appointment as I've started to feel like I did over the last few years, that it's all on my mind and I'm wasting his time. But I'm going to go just to get definitive.
Sorry to ramble on, but I've never said how all this is making me feel to anyone. Your post has made me feel able to admit it. I guess we're all on a journey. Hopefully it will become easier xx
Thank you for sharing and yay I'm pleased that post made you feel able.
It's hard sometimes isn't it life does just expect you to keep plodding along!
I hope your appointment went well today and that you got some answers and help!! Sorry you've not had the best support from professionals that's hard to deal with!
There are a few comments from people above who I hope you can also see because there are some great links and advice, if you cant let me know and I will copy and paste x
I can see others have already sent some very helpful info, so I just wanted to send a virtual hug as I know a new diagnosis can be overwhelming and upsetting and there's so much to get your head around, never mind dealing with friends, family, work, medication etc.!
Try to pace yourself if you can. It's not all in your head, so do talk to all the medics you need to and share what's going on for you, don't hold back. Meds can take a while to adjust to but if you're struggling do reach out. Sometimes there's a bit of trial and error before you find what works for you, and other times you might stumble upon what works fairly fast.
It is a journey, there are good and bad days, but there are always people to talk to like the forum here and LUPUS UK etc., so try not to feel that you are alone in this, although I know it can feel like that at times.
I understand what you are saying. It’s not easy. I got diagnosed with SLE a year ago and I’m still struggling to come to terms with it all. Friends and family don’t understand and to be honest how could they? It’s hard to explain it when a lot of symptoms are hidden from view. I don’t think people know how to deal with a friend / family member telling them they have a chronic disease of which there is no cure. People will say things like “I’m sure the medication will sort things out” without realising that the medication can be severe or “sounds like everything is going well” when it really isn’t. Ultimately, people want to hear that you are ok and they struggle to understand how you could be ok today and yet tomorrow you could be struggling. If it’s hard for us to understand Lupus when we are living and experiencing it, how hard is it for family and friends to get to grips with?
Stress is a major trigger for Lupus and can affect your condition in so many ways. It’s best to avoid stress at all costs but this isn’t easy to do if you have a busy life or a stressful job. Just try to do small things to reduce the stress in your life, it will make a big difference to how you feel.
I’m sorry I don’t really have any answers here but it’s good to talk and you’re not alone.
I know right at the moment I have some visible signs because of the changes to my medication my hands have flared up. I know it sounds daft but I got engaged in Feb this year and currently cant get my ring on which is frustrating but I also feel like I've turned into someone my partner doesn't know, like I've sold him a different me for the past 10 years because I only developed symptoms in December. It's all come so suddenly, we did a lot of fun stuff like climbing the 3 peaks and going boxing and it's come to a halt. He understands but I feel like I'm different.
He is lovely and I know he's probably worried but he's not the best at emotion and hasn't asked what this means he has said maybe the specialist is wrong.
Works been crazy this week and with meds changing I've got home and not been able to move I want to scream at myself get up and go do something but I just don't have it in me. I don't want him to think I'm lazy but I don't know how to approach it with him. Maybe I'll show him the spoon theory
Thank you for your kind words and taking the time to reply xx
I was diagnosed with Lupus a year ago and it was a big shock and adjustment. I was active, constantly on the move and keeping busy. I've realised that I am not able to do what I was used to anymore and this was my "old" normal. You can live a full and fulfilling life still but need to accept that it will be slower than before, you'll learn to pace yourself, space errands or meeting friends, exercise etc and this will become the "new" normal. I have to say that I am still adjusting, some days I really want to run but understand that running today may send me to bed with aches tomorrow so have to slow down.
Talking therapies that Debbie suggested in an earlier post was a massive help for me in the first few months after being diagnosed. I don't know many people who have chronic conditions that I could relate to and speaking in a group, hearing others who have similar problems made me feel understood. As others have suggested it is hard to understand the symptoms unless you experience them yourself. The therapist also suggested some exercises to manage anxiety, negative thoughts etc.
This group has also been great because you see so many positive experiences and advise from people to give you perspective that things will settle and there is light at the end.
It is a journey, take every day as it comes. Feel free to message me privately also if you feel like having a chat.
Thank you so much that's really kind of you! There are so many positive things your right, and the resources shared I'm sure will help me. Posting here has made me realise that I'm not alone I am a bit of a talker so feeling like I don't know how to explain has stumped me so this has been a safe and amazing place to start!
Thank you again 😊 everyday as I comes - definitely xx
Hey Sunshine634, I'm sorry you are having to deal with this.
Best advice I have is to talk to your family and friends. Explain exactly what you are going through - maybe even suggest some helpful information so they can gain a better understanding of just what you go through every single day.
Once you've opened up to your family and close friends and realise just how supportive everyone will be. Then take this new found empowerment and talk to your employer.
I'm sure it will be easier than what your mind has you to believe - our brains love to lie to us.
I remember my sence of impending doom, but instantly felt better after some support (and a good cry 😅)
I know it can be difficult to keep up with the physical activity, but try to stick with it 💪 I've really had to modify (not stop) my physical activity levels due to chronic injuries that never seem to go away, no matter how much rehab I do.
It will get easier 😊
If you would like some more support on dealing with chronic illness feel free to follow me on Instagram @healthcoach_hamish 😊 or Facebook - Hamish Scott (Health Coach Hamish)
Hope you start to feel better soon.
Remember just because only you has the power to change, doesn't mean you have to do it alone 🙌
When I was first diagnosed I had a very high stress and demanding job with lots of deadlines and overtime.
I realized that job was just not a good match for someone with lupus, so I started looking for a new job that had more regular hours, no overtime, and was less demanding.
I found a job in the exact same professíon, same salary, but at a better company, better boss, and I could work from home 3 out of 5 days.
So you need to be proactive in finding the right job for yourself if your current job or company is too stressful. It will take a bit of searching and interviewing the company carefully to make sure they support a good work and life balance, but your health is the most important thing so make it a priority and find a new job if your current job is not accommodating your needs or is too stressful.
Thank you!! I need to speak to my current employer to explain what I experience and offer them some education on my condition. They are a good company so I think I need to offer them the correct information in order to support me, which I have now found through people on here 😊
I'm pleased you got yourself sorted with work that's excellent and thank you for the advice if I don't get the support I need I will definitely take your advice xx
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