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August's Topic of the Month - Studying with Lupus (We want to hear your tips and experiences)

August's Topic of the Month - Studying with Lupus (We want to hear your tips and experiences)

In preparation for those who will be returning to (or starting) school, college or university next month, our topic for discussion in August is 'Studying with Lupus'.

Having a diagnosis of lupus can present additional challenges for someone who is at school or college, but that doesn't mean that you can't go on to achieve good results. There is a lot of support available.

We want to hear if you have any tips for studying with lupus. How did you balance study, fun and rest? Did your place of study make any adjustments for you? Have you used any equipment or support to help ease certain aspects of studying?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

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quite interested to see any replies to this as I start college next month, the first time being in education since being diagnosed so any advice is welcome!

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Hi Athens94,

Good luck with college. What are you going to be studying?

Keep a look out for our blog article towards the end of the month. In the meantime, you may find this Disability Rights UK booklet helpful - disabilityrightsuk.org/site...

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I'm going to be studying Legal Services. Thank you, I'll have a look.

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Good luck. I hope you enjoy it. Keep us updated with how you are getting on.

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I can remember mouth ulcers age 3 then PCOS and HS took over in my teens plus terrible oral decay. I was at Cambridge and my mouth wouldn't open. Trains home up to my amazing dentist who gave me a jab to open the jaw and said goodness me your mouth and as far down your throat as I can see is white. My right lower wisdom was totally impacted. I had Lupus. My advice is tell your University or where your going for higher education. Try not to worry they will understand that you may need additional help like a quiet place to work or to use modern technology to help you with a thesis. 2 things I have only found out recently is patients with Lupus have dyslexia and we can't tolerate alcohol. These may not apply to you but both apply to me. Never let Lupus spoil your life, if you need to rest do so. Your body will tell you what it needs, if you feel sleepy your needing sleep. Try to keep to a regular pattern of waking and sleeping, I know it's tempting to go out and enjoy life as a student that's fine until you find your not so good the next day. Use your body to tell you what you need. I have always done that. Good luck and enjoy your time at wherever your going.

Paul I suggest every medical student should join a FB group. We had one last year, she has graduated now. She said she wished she had joined us sooner as she learned more from my group than her entire rheumatology module.

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Hi Robin1974. Thank you so much for sharing your experiences and advice. It is great to hear that the medical student benefitted so much for their engagement with people with health conditions. We support a couple of schemes that link medical students with volunteer patients and it makes a big impact.

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It'll be interesting to read. I will probably start a professional qualification in the Autumn, and it hadn't occurred to me to let them know I have Lupus. But of course it makes a difference!

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Hi Treetop33,

It is worth having support available, even if you don't need to use it. What do you plan on studying?

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The NCTJ Diploma, distance learning, naturally.

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Good luck. Keep us updated with how you get on.

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Hi Paul_Howard

That's an interesting question. I've seen a wide diversity of experiences when we talk about this subject. Here's mine:

I was diagnosed when I was 14 yo. Two years left of High School, and it really hit me. I'd always been a very good student, top of the class, and when the symptoms started all that changed. I became the worst student of my class, but not because I wanted that. I simply couldn't study, there was so much pain, tiredness, stress not knowing what was going on with my body, no support from anyone as people thought I was faking it and what I was really having was some teenager crisis. After getting my diagnosis (that took some time), my parents had a chat with my teachers and they finally understood that it was real. After that, they simply had to help me, I wasn't a regular student: to understand why I'd miss class so much, why I needed more time for having my homework ready, all the depression I went through, everything became more difficult. First flare and first full treatment with several immunosuppressant drugs. I never discussed this with any classmate. Only teachers. To found out about lupus at that time also changed my decision about what I'd study. I wanted medicine, but.. it was too much for my body. So chose something "lighter", less stressful and without shifts. I had more flares, surgery, etc whilst attending university, I almost lost one year. Heavy flare. I graduated, top of my class, but what an effort! ..things like fainting in class, nose bleeding when I had my final project presentation, etc. Since then I keep studying and learning but mainly from home, more flexible deadlines, etc.

My advice would be:

-Let know teachers/professors/school about your condition. Not as a victim, but "hey, I try my best but sometimes it's more difficult that usual". They will see a different student, and they need to understand why. E.g: It's no easy to look normal when you're sitting in a classroom and feeling sick after taking a bunch of pills.

-Negotiate deadlines. It's so difficult to comply with deadlines when your fatigue has no pattern.

-Have at least one classmate that you can trust and tell about your condition. @uni I had one classmate that helped me to go downstairs and took me to hospital many times. Also, when working as a group my classmate knew about my lupus fog, and fatigue, or why I needed her notes, why I missed class.

-Online lessons are really good. You can pause, rest, keep watching.

-Try to study a little bit everyday. Regular students may study the entire subject one hour before the test, but with lupus that's very unlikely.

-Don't try Red Bull, energy drinks, 300 cups of coffee/day. That may work for regular students, but with lupus is just chaos and it doesn't relieve nor cure your fatigue.

-Carry all your pills, pain killers, omeprazole, anything you may need "in case of" in your bag. You spend so much time in class, that you need to be ready in case of not feeling well.

-Wear a wrist band with your emergency numbers or carry some card in your bag. Someone people can call if you're not feeling well. A whole day of class can be exhausting.

Some article I recently read:

lupusnewstoday.com/2017/08/...

Best of luck with your article @paul_howard :)

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Hi Dalilatm,

Thank you so much for sharing your experiences and advice with us, it is very helpful.

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My daughter was doing A levels when she first got, and was subsequently diagnosed with, Lupus, and really struggled for a while. She is very determined and actually the stress of A-levels was probably part of the trigger for the disease (she got EXCEEDINGLY stressed). Three years on, she is now at Uni and is managing really well. She had to learn a different approach to studying - her old style of revising etc., and being really worried about doing well actually worsened her disease (stress trigger), but she has discovered that she can still do really well working less intensively and with less stress. But she had to shift her perspective from 'I have to know everything and be the best' to 'so long as I do OK, that's fine - it's not worth making myself ill over'.

She is now juggling university with working part time, living (cooking etc. - she is GF/vegan so cooking is a big part of her days), socialising, exercising/yoga and occasional bouts of flopping when she has a flare, but overall is doing really well. If you want any more specifics, feel free to message me.

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Hi yakamalayo,

Thank you so much for sharing your daughter's experiences. It is excellent to hear that she has adapted well and getting on brilliantly with her studies still.

Has she had any assistance from her university?

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Oh yes, I meant to mention that. She did get allowances for extra time in her A level exams and also had a counsellor at college, which she found very helpful and supportive. Again, she is eligible for extra time for assignments and exams at university, which she has made use of a couple of times. She actually missed one of her exams in May due to a flare-up and because of her circumstances wasn't penalised for it, although it was jus her first year, so maybe it would have been the same for anyone who was ill, I'm not sure.

She did a year at Loughborough University (art foundation) which was exceedingly supportive. She is now at Edinburgh University where students seem to have to fend for themselves much more, with less support, but she has found out about what's available and has been able to access what she needs, but has needed to look for it as it is less obvious than at Loughborough.

I think she could potentially have had financial support, and a college friend of hers with MG definitely accessed financial support when she went to Sheffield uni, but Calypso decided she didn't want to apply for that, or have her condition become an excuse or a way to get extra benefits that she didn't feel she really needed.

Hope that's helpful.

Polly

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Thanks for sharing yakamalayo, it is very helpful.

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