Hi, I’m a 23 year old recently diagnosed with SLE (lupus cerebritis + HLH on my first flare 1 yr ago). I’m hoping to ask for advice from or to connect with professionals who also have lupus. I recently graduated from medical school despite my lupus episode last year, and I’m at lost as to how to balance a medical career (which isn’t the easiest even for healthy folk) and a life with lupus. I’ll be taking on 36 hour shifts next year with irregular sleeping and eating schedules and in a very high stress environment.
My lupus has now been controlled with cyclophosphamide, steroids, and other medications, but I’m always very scared that I’ll do something and cause a flare up. It’s a very big mental burden to me, and I can’t avoid internship (with its aforementioned stresses) next year. I would ask my doctor, but I don’t feel like my doctor understands my concerns (ironically). I know that diseases like lupus do happen in healthcare workers, there’s no way I can connect with them locally since it’s a silent illness (in more than one sense).
If possible, I’d like to seek advice on how to balance a professional life with having lupus. Thank you very much for your time.
Artres
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I don’t know. My lupus is new enough that I’m not too badly off with it (now that it’s controlled). I don’t want to limit what I can do because of it. I’d still like to try managing a career, and I was just wondering if anyone has made it work somehow and had any tips or ways that they have dealt with it. Nonetheless thank you for taking the time to comment on my post.
It may be worth putting things in place that constitute "reasonable adjustments" to try help you keep working / stay working, and cover you with things like "disability leave" that would not trigger sickness policy and proceedures if you did need to take time off / if you have a flare up
I personally had to retire from the NHS due to ill health as I'm not well enough to work, (mainly due to the fatigue) and I know a lot of Lupus people could not manage 36 hour shifts or the stress, so I'd say have a serious think about that side of things .... for example would you be able to not work a shift system, could shifts be more "predictable", could you be given extra days "recovery time" between shifts, could you work but do less hours (such as only work part time) ... these may have to be looked at as "reasonable adjustments" if they go against the "normal expected" in your employment role
Please be aware that allthough Lupus affects everyone differently, stress, not getting enough sleep, and not correctly paceing any activity, does not help anyone with Lupus, and we have to really honestly look at what our "limitations" may be and how we can adapt to them so that we "manage a life and be as well as we can be"
Please speak to your doctors ... we can only improve understanding if we speak up and educate others
Thank you very much for taking the time to read and comment on my post. I really appreciate your feedback. I didn’t know that I can try to negotiate on working terms and hours... I honestly thought that unless I’m having an active flair (and/or admitted), I’d be treated the same as everyone else and have the same duties. I’m not from the UK, but it doesn’t hurt to ask. I think I’d like to at least try intern year. If I honestly can’t make it, then I’ll stop, but I didn’t spend six years in school (and ending up with this disease to boot) to just let my degree hang.
I honestly think it’s a bit of a lost cause because I see her for maybe 2.5 minutes every six months (public healthcare), but I’ll try my best to. Thank you so very much for responding to my post and referring me to the added information.
Hi Artres. I’m in the same boat. I just received my degree and I’m in school again. I don’t want to feel like I’m wasting my degree. Do you think that maybe you can work in a private practice?
Hi, thank you very much for taking the time to comment on my post. I understand completely. Here, even to do private practice, I'd still need to complete my internship year first. Afterwards, it's possible to sign on as a private practitioner.
In UK it comes under the equality act if needing employment adjustments due to a "disability" and in UK the definition of "disability" includes most people who have Lupus as "You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."
I'm sure other places have similar in place to the UK
Thank you very much for replying to my comment. I looked up the disability act where I am, and lupus is included there as well, so it is covered. I'm a bit more relieved, though I probably still won't be comfortable with disclosing my condition to the people around me unless absolutely needed.
I am a retired nurse. I suffered a significant work related injury 10 years before I was diagnosed sjogrens syndrome ?lupus, ctd, thyroid hashimotos
At the time of my injury, staff shortages were rife! (2006). I was the only trained nurse responsible for a 28 bedded ward. I was given 2 health care support workers on the Rota that day. Neither of them wanted to be there. The work was very hard going because that late shift, we had approximately 8 patients - post operative care to provide, as well as other patients with multiple health issues, including dementia, addictions, so on...
I was taken to A/E whereby there was one doctor covering that department, as well as providing on call service to all wards. I kid you not! It was a Bank holiday. Unsurprisingly, I did not get the care I needed.
I was discharged home, despite my families best efforts to get me seen by a specialist. Within the next hour I was treated as an emergency patient at an all night dental practice. My husband contacted the A/E doctor at 2am because I had gone to sleep in my uniform and I was appearing to be suffering from concussion. The doctor told him I was a nurse and would know if I needed to return to A/E.!!!
I will not drag you through the horror of the next 2 years of my sickness absence. GP and HR Dr advice I was not fit to return to work. Yet, I was harassed via telephone, and scathing letters, from so called nurse and HR managers. Though, you may have guessed, I significant damage to my mouth and teeth through my injury. Additionally, I suffered a significant head injury, knee and shoulder injury also.
I loved my job! Nursing, that is, because I care about people. Especially, getting them well,l and promoting healthy lifestyle. However, as a patient who happened to be a nurse, I was shocked at the absolute lack of care I received.
Thus, in my very fragile state, and being persued to return to work, I reasoned, I must get back to work. A) I felt an overwhelming need, to care for patients, (now knowing, through my experience), that not all medics care enough, or/and, do not recognise when a person is suffering an invisible illness, or, are so short staffed they cannot care as well as they desire to. B) being harassed to return to work, even from the morning after injury, (yes, that is how seriously short staffed we were), somehow, I believed I was not as ill, or burnt out, as I felt.
During my sick leave, it became apparent that I would have to self fund specialist dental care. Cumulative absence had necessitated a short spell accepting benefits in order to keep my job open. I did not claim compensation from the NHS because I believed they were strapped for cash and fundamentally, I was a vocational nurse. Money was not my reason of career choice. However, for reasons already stated, as well as now being faced with a monumental dental bill, I returned to work part-time, for another gruelling 8 years.
Those 8 years, funded my dental bill. I worked a day on, slept most of the next day off, a day on, slept next day,..... that was the pattern of my life. No social life whatsoever. I worked until I was 64, on an extremely reduced pension (due to the post injury sick leave and being paid out on my last 3 year salary). 3 months after I retired, I collapsed.
The next 18 months, I became seriously unwell. I was diagnosed prolapse discs, sciatica, dermatology issues, sjogrens, ?lupus, ctd, hashimotos thyroid disease.
Apparently, one of my blood results, during sickness absence, following my injury at work, had indicated such autoimmune disease. I had never been informed.
Had I known, what I now know, I would have retired on the grounds of health sickness.
Artres, I tell you all of the above, all true, because you do know! You have a diagnosis. You feel ill without medication. Health workers face a lot of stress that is part of the role.
Please, don't put yourself through it, unless you can guarantee that you will be given preferential treatment. Alas, my colleagues expected me to work at the same pace. I actually pushed myself much harder, I had to. I did not have the stamina my colleagues took for granted themselves.
In fact, everyone expected more of me because I was the part-timer. And, Invisible illness doesn't show until it flares. When it flares, sickness absence means colleagues do not see what we endure.
Nowadays, I really, truly, care for, and about me. I learnt the very hard way.
However, I feel so damaged by the NHS, As I began to come to terms with my illness and mistreatment, I approached my GP, for psychological referral. (I needed to make sense of my experiences). I was refused funding as I did not meet the criteria.
I received, very costly, private psychological therapy. Once again, the NHS let me down. My meagre nursing pension, then funding my need, for counselling. The counselling helped me process the difficulties.
Ps I studied hard. I have 2 degrees and a teacher qualification. I ask myself, how could I have been so stupid? As an educated woman, I should have known better. Well, I do now. I thank God for my body. I listen carefully, to what it needs.
Be good to yourself. Only you can, and will, decide where your future lays. Please, consider carefully, make wise choices. Feelings are as important as educational qualifications. Listen to how you, Artres feels.
Thank you very much for sharing your story and taking the time to comment on my post. I really appreciate it. Wow, what you said sounds really similar to what's going on here (except not as bad- we get capped at twenty patients, I believe). I agree with you about what you said with an overwhelming need to care for patients. My lupus taught me a lot about what it means to be a doctor and a patient. I hope that I can use this experience to be a better doctor, one who understands and empathizes more with patients. I'll try my best to get some information on what can be done in the workplace about my lupus (I don't expect preferential treatment given the work shortage, but maybe a bit of understanding or a less demanding position would be nice). If I can't handle the work, then I'll find something else to do if possible. I'm still well enough to be high functioning, but I've learned my limits and not to push beyond them (too much). Thank you so much for your insight and wisdom!
I managed a professional life until my late fifties, when my lupus got worse. I was a professor, which is less physically demanding than medicine. I had a physician friend who was able to arrange shared residency with another mother of a toddler - I wonder if this might be possible for you? It was at the University of Rochester in New York. My problem was that I never felt that I was doing my best because just doing my job at all took all my strength. No one else seemed to think I was doing badly but it was painful for me. Still, I earned a living, got to do something I loved, and was part of an interesting and often very kind community. Give it a try, if you feel up to it now, and be sure to ask for what you need as you go along. One of the hardest things about lupus for me is that I hesitate to try things because I'm afraid I won't be able to see them through. This has not been helpful.
Thank you for commenting on my post. I'm not sure if shared residency is a thing here, but it's worth looking into. I recovered well after my initial flare up, so I'm still able to study and get through my degree. I did feel a difference in how much I can work between "before lupus" and "after lupus", and I need to put in more time and effort into my work than I used to, so I understand what you're talking about. I'll give it a try if I can, and if I can't, then at least I'll have tried. Thank you very much!
Hi Artres. I am in the medical/social services field and used to work very long hours with patients. I had to move to part-ish time status. Now if I was still doing my post doc fellowship I am not sure what would happen. I understand your position and desire to complete internship, residency and then fellowship. You have a long haul ahead of you though. And it's not going to get easier. Every time the chief grills you, a patient complains about you, you are unrested, unfed, you can flare. And then what happens? This is your new life that you may need to come to terms with earlier than later. By no means am I suggesting you quit. But I am telling you that a balance somehow someway is critical. Or you won't finish. You need to get some ADA protection for yourself. You have a real illness. Good luck and take care of yourself. mentally and physically.
Thank you for taking the time to comment on my post. It is indeed a very long haul... it seems like there's quite a number of cases where the diseases come in the middle of or after fellowship (when the longest call days are over). I'm not the best communicator, so I'm not sure what will happen once I start working. I'm seeing a counselor regularly (and will continue seeing one for the foreseeable future), so hopefully that helps. I'm trying to get all the supportive care that I can to try to make this easier. I haven't really had a chance to really digest and think about my own diagnosis due to how busy this past year was, so I'll try to talk that over with my counselor over the summer. It's hard to accept that I'm not as capable as I used to be. Thank you for your comment; I'll do my best to find that balance and try to make it out somehow.
I have been in a similar situation with you previously. Been diagnosed during 3rd year of med school and managed to graduate while coping with flares. I have had to learn to work within limitations and pace myself and rest when i know that i have overdone things.
Foundation Years can be really stressful. I had a flare during my FY year, another during my CMT and ST3 year. All triggered by the lack of sleep, stress and staff shortages. Unfilled rotas have become an increasing issue which will put extra stress on you.
Personally, you will have to discuss the rota with occupational health and speak to your program director beforehand and explain your situation. I found back to back on call blocks to be really detrimental to my health and it caused me to flare. Personally, i took 2 years off to do another masters recently due to a flare and am currently in the middle of a huge flare at the moment. Advice that has been given to me is to work part-time or switch careers to something with no oncalls which has been something i have tried resisting. The other option would be to do lab based specialties with non-resident on calls, public health or occupational medicine.
On several occasions, even though i was on sick leave but I had the clinical director, HR and nurse manager ringing me harassing me asking when i can come back to work. It is not going to be easy and most people would be quite unsympathetic towards your situation.
Thank you for commenting on my post. If you don't mind me asking, how did you manage to work with calls and such while suffering through flares? I'm trying to get a meeting with the program director to see if there's anything that can be done. Logically, I know I can't be the only case where something like this has happened. I think I'd like that- taking a break when I can to do something else- I think it's an option that I can explore further. I have also heard of cases where people switched specialties to something lab based due to illness or some other cause. I don't expect people to be particularly sympathetic (least of all in a situation with staff shortage)... I wouldn't want to disclose the condition if I don't have to. Thank you very much for your advice!
It has not been easy coping with on-calls and work while suffering with flares. I have had to extend my training a few times due to the time I had to take off work with the flares. I found 4 days of back to back on-call shifts to be my max and anything more than that would put me into a flare. Sometimes, I am just so exhausted that I can't even complete a block of on-call shifts without calling in sick but everyone is different so I can't comment for you.
Occupational health will be your greatest friend as they can suggest reasonable adjustments to the rota for you though it may come at a financial disincentive. I am not sure if you suffer from weakness or arthritis as I have had to change/adjust my rotations and limit them to mainly medical rotations as I would have issues or trouble with dexterity and holding the surgical equipment in theatre due to my arthritis and would not be able to fulfill the surgical rotation competencies as an FY2 so recommend that you check these issues out beforehand.
Hello Artres, I retrained as a teacher and I am currently in my newly qualified teacher training year. I too was worried when I started because it is both a mentally and physically demanding job. I asked my consultant what he thought before I trained and he did not see it as a problem so I just gave it a go. During the week I work roughly 60 hours and on average 6 hours on the weekend which can increase depending on marking etc. I'm glad I took up the role because although it is very challenging I do enjoy it and I think if you do not try, how do you know if you can do the job? Before I started work I had an appointment with the council to establish what reasonable steps adjustments needed to be put into place to help me in my new job. I was lucky because the lady I spoke to had lupus so she knew where I stood and asked me the appropriate questions. I think you should also request an additional meeting with this department after you have started work (after a month or so) so that you can add any additional reasonable steps that might be needed.
I think it's important to have a strong support network around you and make sure you are are extremely organised. I find lists very helpful. I make sure I have my meals etc ready for the week so that when I get home I eat and then rest. I try to get at least 7 hours sleep each night and by Friday evening I'm completely exhausted but I try to take Saturday off. The first term was extremely hard due to the workload and I wouldn't have lunch etc because there was simply not enough time. I'm getting better at the job with the more practice I am getting. I'm fully aware that I may flare at any point but thankfully this has not happened.
I think it is very important you give your internship a go with a positive attitude and try not to focus on what may go wrong. I hope you find this helpful and if you would like to talk further please drop me a direct message.
Thank you for commenting on my post. While I wouldn't call medicine my passion in life, I do enjoy helping others and find medicine challenging and engaging. I'll try to keep organized; I agree and do find that being unorganized adds unnecessary stress to my daily life. Thank you for your advice. I'll do my best to keep a positive attitude. Thank you very much!
Sorry to hear you are so stressed about your lupus and your career.
I do not have lupus but if it's any help at all my son has SLE and lupus nephritis diagnosed a few days after his 18th birthday Sept last year. And neither is he a doctor. ( I am a nurse).
If I have learnt anything in the last 7 months its that as long as you take your medication regularly, exercise and live as healthy a life as possible then there is every chance you i can be fine.
Fin my son is a cyclist, training with the Great Britain foundation programme, hoping to get to the Olympics one day. His onset of SLE was very acute with a two week history before being diagnosed. Kidneys were grace 4 out of 5 grades of nephritis. He was really sick.
As a mother I have been terrified of flare ups since. But in spite of racing, training, travelling miles and probably eating garbage at times, he is fine. He regularly takes mycophenolate mofetil twice daily and finished his prednisolone in January. He is also on IV rituximab every 6-9 months.
The only problem he has had its he picked up norovirus but I guess anyone can although he is now at risk now with being on immunosuppressents.
If you have had no issues since your initial flare up the maybe you are well controlled by your meds?
My only concern is having low wcc and picking up bugs in a hospital. But I guess after your foundation years you go for a less 'infective
....post. The above advice of lists, eating well, being organised beforehand in anticipation of your shifts, resting ( although that should include exercise!) on your days off etc
I have colleagues who are Drs and work with with chronic conditions. If you ate determined then totally go for it!
You won't know until you try.
But if you are anxious to start with you maybe with your counsellor need to work on mindfulness, coping strategies etc.
All the very best. You sound like you will make an amazing doctor!!
Thank you for commenting on my post, and thank you for all your care that you have given your son. I know it can't be easy; my parents were (and still are) scared for me. I do take my medications regularly (again, thanks to my parents- otherwise I'd probably end up accidentally skipping at least a couple of days). I'm really impressed by how he has kept up his cycling! I'm not on mycophenolate motefil or rituximab, but I think rituximab was considered at one point. Yes, the infection is a big concern, especially around flu season. I'm definitely going to dodge the pediatrics department as much as I can, but it's a bit difficult sometimes. I've always been a bit anxious prone, but I think coping strategies are indeed on the agenda somewhere. Thank you for your compliment! I think now more than ever, I want to be a doctor. I'd like to try my best.
I once heard a dietician explain to a newly diagnosed diabetic " don't let the diabetes define you. You define your diabetes ". Surely the same can be said for any chronic illness?? professor sue lightstone, a lupus nephrologist in London, advised Fin's renal team ( we live in the Highlands of Scotland.... Not exactly a centre of excellence, although they are truly excellent!!) and I emailed her to thank her. She was so lovely and said that as she gets older and wiser she has leant that attitude has a lot to do with lupus.
Look her up and email her if you want really solid advice from a doctor to a doctor. I sense it will be a "go for it" 😀
Oh wow, that must have been fun. Before I had lupus, I wanted to work in pediatrics research (less so with clinical part because I panic when babies cry, and the doctor who brought us to the NICU also burst a stitch laughing at a bunch of med students having no clue how to change a diaper... and then of course the baby peed on an unfortunate classmate). Thank you very much. She sounds like a really excellent doctor and a great person.
You've had some really great and specific advice here, and I can't add anything beyond:
1. Congratulations on graduating! A fantastic achievement. You must have worked so hard.
2. Be open with your employer about your diagnosis and needs. A potential employer who reacts badly if you disclose your needs now will be an absolute nightmare if you withhold your health status until you are ill. They might even claim that your withholding invalidates any entitlements you have to care etc.
Thank you for commenting on my post. I know- I’m really grateful for all the advice I’ve been given on here. I didn’t expect that at all (there have been times when I’ve felt alone. I know healthcare workers with lupus exist, but I had no way of connecting with them).
Thank you so much!! It’s been a hard six years. I guess you could argue that I worked a bit too hard. The final year I mostly dealt with the stress by sleeping early (11pm, no matter how much work I have to do). I can’t control when I sleep next year, hence my anxiousness.
That’s actually a really good point. I definitely need to ask the coordinator how things are done here and if there are any rules/regulations regarding the subject. It’s a bit frustrating how this sort of information isn’t readily available, but at least I still have people I can ask.
Hi Artes- I was older than yourself when I was diagnosed (33) at the time I was working as a labour ward midwife with hopes to be a Labour Ward Co ordinator ( I’d applied for my first post)
At the time my Rheumatologist told me I’d probably never work again, certainly not full time & never as a midwife.
I work for the NHS and after 9 months away my boss at the time offered me 2 days one week / 1 the next in a Clinic setting. I did this for a while then added in a Labour shift. A few years on from this I trained in medical ultrasound & have worked full time as a midwife sonographer for 12 years.
My career didn’t follow my desired pathway & there were compromises to make on the way however I have a job I love. I do have a social life but sometimes have to cry off events to keep myself well to make sure I get to work.
I know you must feel very torn / frustrated - you’ll have worked hard for that medical degree. There’s got to be a way forward. Good luck with it.
Thank you for commenting on my post and sharing your experience. I really hope there’s a way forward for my career. I wouldn’t mind compromises if I have to, but I’d like to do the most that I can (in respects to my body’s limitations). Thank you very much!
I was in international business for many years with lupus. The international travel was difficult and I had to find ways to cope (ex. arriving a day early so I could spend a day in bed recovering from the travel). I think I only lasted as long as I did because I could work from home often, had control of my own schedule and could spent a lot of time in bed recovering from a trip. Even then I had to retire early at 58 because I couldn't physically deal with it anymore. However, the stress was the biggest problem. Stress can set off a flare faster than anything so you might want to take that into consideration. I wish you luck and hope you can pursue your chosen career as long as possible. The most difficult thing about lupus, in my opinion, is excepting that i have limitations and can't do everything I would like to do, or, could have easily done before, without seeing myself as a failure. That was the most difficult part for me and one I still struggle with. In the end, lupus is always the boss and it rarely negotiates.
Thank you for commenting on my post. I understand what you said about accepting limitations. Since this is still relatively new for me, it’s been difficult for me to accept that there are things my classmate can do that I just can’t (such as study until 3 in the morning or worse). I’m still trying to come to terms with the issue. The stress doesn’t help, but I’ll have to work hard to try more stress management strategies. Thank you very much!
I hope you will find a way to manage your lupus and work.and that your work help you to find a way this can work for you, as it will be hard maybe part time work would be a possibility.Your experiences of lupus will make you a better more empathetic doctor, something that is greatly needed in your profession.Good luck.Jane
I'm a medic with SLE too. I know everyone's SLE is different and only the other day I posted a request for some coping tips - so I don't think I can say I am an authority on how to be a medic and live with SLE. That being said I found on-calls very difficult to manage, at work I coped and managed to pass postgraduate exams BUT at home I was a zombie, had multiple miscarriages etc. When I look back at that time I regret not asking for time-off work when unwell and just pulling through because it was expected. Now I do part-time research and a specialty with non-resident on-calls - I love it! I'm not saying that it's not as difficult as other career choices, but it's not doing shift work and on-calls that made the biggest difference in my health. I managed to have a successful pregnancy with APL antibodies normalising. I have had one flare since giving birth, but I've managed to take time off on my research days and make up for it later. My rheum told me to keep doing what I love for as long as I can do it, to worry about the future when it comes.
Top tips: 1. Ask for any reasonable adjustment you can and don't feel guilty, contact your union and occupational health to find out your entitlement. 2. Take time off work when you need it and don't just try and pull through. You do not owe your colleagues an explanation. 3. Use some of your annual leave to make a few long-weekends throughout the year so you can 'recover' 4. If there is a specialty that you enjoy that is non-res on call or no on-call, go for it 5. If you need a break, transfer your skills into related things like research or medical education for a year or two, then go back when ready. These careers are equally challenging/rewarding but can be more flexible. 6. Outsource what you can, pay for a cleaner, batch-cook meals etc. 7. Focus on the positives, you succeeded despite obstacles GO YOU!
Thank you very much for commenting on my post and sharing your story. I'm very sorry to hear about what happened to you, but I'm glad that you had a successful pregnancy. I'm very thankful for your tips! I'll definitely keep my annual leave back to just slot in some recovery time, and I think taking a year or two off for research or education sounds very promising. Thank you so much! Best of luck to you as well.
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