Hello everyone , First of all I’m so glad that I came through this supportive group.
I was diagnosed with Lupus 3 days ago,I’m 23 years old .I couldn’t believe it at first but now I have accepted that I have to live with it .
Maybe because I’m new with this disease I get worried too much I keep overthinking if it’s gonna damage my main organs .And also I’m afraid if it’s gonna affect my work as a nurse and my career. These negative thoughts killing me inside . I feel hopeless 🥹🥹
I keep thinking I’m gonna die from this disease sooner or later .
Your positive thoughts can be great help for me mentally.
Thank you
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sunmoon_
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Hi, lupus is different for everyone, some have never had organ involvement others have. I was a nurse working with lupus and I was fine until the pandemic. I was shielding and when it was time to think about going back I decided to leave. If you get started on immunosupresents then speak to occupational health as they'll be able to advise areas that aren't suitable for you. It's very scary when you find out you have lupus and general searching of the internet isn't advised as not everyone has the same outcome as it would have you believe. You will get a lot of support on this site as well as useful publications available direct from lupus UK. Take care 🌹
Thank you so much for your reply,I really appreciate. I have been given hydroxy for 3 months now and I have follow up with rheumatologist in 2 months time . I hope it goes well with current treatment cause I don’t want to take steroids as it has more side effects.
I think it's about 9 years since I started hydroxy, remember to get your eyes tested yearly whilst on it. I've never been given steroids ( other than an injection twice for pain prior to methotrexate) but I do take methotrexate weekly and for a year and a half I also had a retuximab infusion, thankfully for the moment I've stopped the infusion. Like I said before everyone is different and has different needs, some folk never take any other medications other than hydroxy 🌹
You're not being nosey at all. No I'm not. I worked as a psychiatric nurse and we were always sent in with the more challenging patients. Quite frequently this involved a lot of spitting and very close contact so with being immunocompromised and the worry from covid I decided for me that it wasn't worth it 🌹
To add to the helpful reply you already had - lupus can impact everyone differently, so while some people are unable to work, have to reduce their hours, or need to get some reasonable adjustments to their role, others are able to continue in their roles as they have before. We have a booklet guide about working which you may find helpful: lupusuk.org.uk/wp-content/u...
And to reassure you, improvements in lupus treatments mean that the vast majority of people have a normal lifespan. If you're googling you may find some outdated information which suggests otherwise. But having worries about how lupus may impact your future, or just your life in general, is very understandable and very common. Lupus can be a lot to deal with! But you don't have to deal with those worries and negative thoughts alone. If you would find it helpful to talk to someone and get some support, I would encourage you to speak to your GP about what mental health support is available in your area. You might also find The Wren Project helpful, as they offer (free) support specifically for people with autoimmune conditions: wrenproject.org/what-we-offer
If you have any questions, or there's any information I can find for you, please do get in touch any time.
I’ve probably had lupus for years based on symtpoms but only recently diagnosed
I’m so sorry you’re so young with your diagnosis but at least you can get ahead of it
I am in my 40s and have 4 kids all in school /daycare and all since the pandemic playing catch up with infections/viruses etc
You name it I’ve been exposed to it in the last couple of years - and with kids there is no escaping -they literally are attached to you with their illness. I did pick up some-not all.
I know it’s not comparable to being a nurse but I obviously wasn’t wearing any PPE and this could be an option to you to help you not being exposed. If doctors and nurses worked throught the pandemic it might be ok for you . If you are not on immunosuppressants that is
But as with everything talk with your healthcare team and get their input
lupus is different for everyone
I’m lucky -mine is mild and I’ve decided for now I’m ok without any medication as I’ve managed up to now
So since my diagnosis, besides understanding some of the stuff I was experiencing , my life hasn’t changed
I’m sorry to learn of your diagnosis— at such a young age. A renowned rheumatologist recommended the Autoimmune Protocol to me, after I had spent the year following my diagnosis fighting pain and fatigue. It has made a huge difference for me. I have been on it for 5 years now, and my Lupus is now considered mild.
Senior sister here !! You can nurse just use Occupational health. I have a flexible working in place can only work x2 N in a row and have to have a sleep day and x2 days off and what I work I have day off so if I work 1 LD 1 day off or 2 LD in a row 2 days off if that makes sense. I also work in ED
Hi Sunmoon and welcome! Wow, you’ve only had the diagnosis for 3 days, that’s very big news. You might need some time to process this. In the meantime, yes, you can still work as a nurse with lupus, for as long as you feel able. That might be quite a while yet; it all depends on how lupus affects you.
Personally, I work as a healthcare professional with lupus, but I work part-time because of the pain and fatigue. Lupus mainly affects my skin, joints and blood, so most of the time I can manage part-time work and a few choice hobbies with this. Occasionally, it flares badly, and then I’m off work for a while. Then my body seems to recover itself, and I’m able to return to work.
Organ involvement is very case-dependent too. I once had pericarditis, but I recovered from that with no scarring or lasting damage. So even when lupus attacks your organs, it’s not necessarily long-term or fatal.
Because lupus is so unpredictable, many of us here just try to do the best we can each day—doing the tasks we can manage, pacing ourselves, lots of rest and self-care, planning for the worst but hoping for the best. Feel free to post here anytime: you are not alone, and we understand. 🌻🌈💚
HiSo sorry you are feeling like this. I can see that you have received some lovely supportive replies which I hope are showing you that you are not alone and we understand what you are going through.
I found that joining Lupus UK really helped me and gave me access to information and also contact numbers of someone to talk to about lupus and my worries like my job if I needed to. They have lots of useful information leaflets too.
Hi Sunmoon,Sorry to hear what you are going through at the moment. It is not something new to all SLE patients who are working in the this field as for you , you are young and still have years ahead of you . Your health comes first whatever it is you have to take preference above all. Always remember that your employer might think it is the best for them or what they think best for you but at the end of the day you have to think for your health and your well being how you have to cope from day to day living, ie, cooking shopping, getting out of bed every day with the pain, do you have the energy and strength in your body to cope with it there will be weeks if not months sometimes it takes for it to over come. This is SLE everyone is different. You have to phase yourself in what you do. It is not what nursing does . We dont phase our workload. Stress is the main trigger of SLE . Nursing is Stress!!
When I left nursing with severe migraines, I could barely walk or get out of bed it was a huge relief but my hubby kept wantin me to return as he did not understand what going on or what I was going through at that time also I had not had a diagnosis as I would feel ok one day and the next day I would be really bad. There were good days but the bad days certainly over rides the good. It took nearly 4 years for them to reach a diagnosis of SLE from my Severe debilitating migraines. The minute I started to take Hydroxchoriquine my migraines creased. It is linked by my Rheumatologist dismissed it. But I know it is linked as I get it everytime I have a flare up, it is together with my migraines. My flare up consist of loss of strength, pain all over including muscles and joints, extreme tiredness, and all I want to do is sleep. When I sleep it off a good 5 -6 hours it feels better but I would sleep more again during the night. That is how tired I would be . The lethargy and tiredness can wear you down.
So sleep is very important to your body . Early stages f my illness, I would sleep at least 16-18 hours a day. Yes it was u unbelievable long , I lost loads of weight as well I went down to 8st. Because I was barely eating and sleeping loads. I have gained weight since then. And maintain my weight but it is still an issue as I lose weight quite easily and gain them back to the normal weight . As I have a gut issues now.
So , think hard what you want to do with your job ask your occ health/HR for a change of job within your hosp, reference of your health from your Rheumatologist, Also if they (occhealth /hr)can provide something low stress and less demanding for you ie office base or clinical base that is something short hours . To help with your health . As this is going to be a long term issue . Doing this itself will cause some amount of stress and will trigger flare ups. But once you get over the hurdle and know what you really want from your outcome then work towards that goal and ask of it is achievable.
I have been there my work place tried to hold my job they could not even find a place suitable for me in the 2years I was ill. It was so disappointing. My manager was disappointed that she had to release me as I was a senior staff. That is how is goes .. So hopefully they will find something suitable for u. xx
Hello Sunmoon, as others have said Lupus is so different for everyone.
I was diagnosed 7 years ago but symptoms started in 2009.
During this time I've had periods of severe flares and periods of remission.
One of the most difficult things about lupus is its unpredictable.
You do learn to adapt.
I'm not a nurse but I work in schools and children's centres, I'm exposed to lots of viruses. Over the years I've generally found I don't pick up more infections but it takes me longer to recover.
The main barrier to working for me is fatigue, fevers and pain which worsen when I do too much.
I'm self employed now so work as many or little hours as suits me.
I used to work for a charity but workload was too much.
Don't be scared to tell your employers what is happening and what you need.
Only 3 days. Really fresh. But you have probably been feeling terrible for a while leading up to this and now at least you have a diagnosis. This will lead to all kinds of options, and at least in my experience it takes a lot of trial and modifications to medications & lifestyle to find the best options for each person. And even for the same person within different times if their lives. I think you should absolutely plan to continue to work in health care (if you love it). I think many people, especially young people like you can & do lead really active lives with Lupus. My lupus has been all over the spectrum from really pretty mild (able to work, able to do a lot of rigorous recreational sport) to a year where it involved my liver and I was pretty wiped out (as much or more from the medications than the disease) and couldn’t do much at all, and then back to years of doing well with biologics & anti inflammatories & no organ issues. There are sooo many more meds now and I think you should feel optimistic. My advice is to 1)find a rhuem you really like & is willing to really listen and try new things as needed & 2) try to do everything you can to minimize stress (be it therapy, meditation, long walks in nature, reaching out for help, simplifying your life, maybe nursing in a office setting vs hospital setting, etc - anything & everything that keeps you in a good headspace). Like everything in life, attitude is just about everything. I wish you the best of luck 💕
I hope things are better for you now .thank you so much for your response .It’s really motivating . You’re really great for putting this out for a stranger. I appreciate.
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