Sorry to bother you with the same question, again.
I moved to the UK in September to study, having already being diagnosed with Lupus in another country.
I registered with a GP as soon as I arrived in the UK, but since I did not have a proper document in English to verify the diagnosis, he doubted me – despite translated documents of a blood panel and kidney biopsy results. He ordered a blood test after which he referred me to a rheumatologist. I’m still waiting for an appointment.
For the same reason, not having a “proper diagnosis”, I wasn’t able to register with the university’s disability office. The result was to stress myself to breaking point – I forced myself to do a presentation, despite suffering from anxiety, going three days without sleep. I cannot begin to describe how I feel right now; I’m a bloated bag of pain.
I need to register with the disability office ASAP. Can somebody help me – how can I convince them that I must avoid stressful conditions, like any form of public speaking, strenuous physical activity, exposure to UV / sunlight, that I also suffer from arthritis and I cannot take notes in class, and a million other lupus related implications? I will not survive another semester like this.
Thanks
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SRamkin
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Hello Sramkin. I saw your post last night - and couldn't think what to write back to you that would make you feel better.
I have experience of only one UK university's disability unit (not as a student, but as a departmental rep, whose job was to refer students to them). Based on this experience - where I more than once went to battle on behalf of students who were unwell, without a formal diagnosis, you are unlikely to get very far with getting help and support. Even then, if you are self-funding and from outside the EU, you may still find that it is difficult to get what you need - although our system has changed in recent years, so I may be overly pessimistic about this.
All I can suggest is that you speak to people: your supervisor, the disability rep in your department, your disability service, and importantly your GP. Your GP has the power to write a letter to your department on your behalf - even without a diagnosis, if you are unwell, and your department should respond sympathetically. Keep copies of all correspondence,so that you can draw on these if you need to. There is a huge amount of ignorance out there about lupus - so this might be a grand struggle.
Finally - on a personal note, as someone who has lupus and done a PhD - I think that you may want to consider going part time, if this is possible. I didn't have lupus when I did my PhD - but I know that it is an extremely demanding academic environment. This is only the first term too - and if you are feeling this bad now, imagine how it may be in your third year with submission deadlines looming. This is not intended to be be negative. It may be your best chance of completing.
I too have completed university four times now still studying and working full time. I would discuss with the department just so they know in advance that you are waiting for a diagnosis. Or you can talk to your lecturer to arrange extensions so you can relax. Are you in the student union they also have reps who can support you. Most importantly though is that you now become proactive. Right your not getting a diagnosis sowere you on medication are you still receiving this? Have you got medical insurance? If not go back home get insurance then return it would take a weekend to sort and return. At the end of the day sit down and immerse yourself in your studies being busy distracts the mind helps you finish your course and before you know it your done. Come on 'crack on' the more empowered of us there are the more we can tackle and expose lupus.
Have you discussed your condition with your personal tutor or the welfare department of the university? Whilst you may not have a confirmed diagnosis by a consultant in the UK, they should provide support if there are some things you have difficulty with. I know most universities have a note-taking service available to help people like yourself in lectures. Getting a dictophone and asking to record your lectures may also help.
Try taking your translated documents to your personal tutor along with some information leaflets on lupus. If you need some of these, I can provide you with some. Just send me a private message with your address.
Whereabouts do you study? If we know of any other young people nearby to you we can possibly put you in touch with them and they may be able to provide some more advice.
Can I ask you what are you studying exactly? bacause obviously stressful activities are a part of most degrees. So if you pick a degree where giving presentations is an important partof the subject, you cannot expect to be exempt from them on account of the fact that stress can bring up a flare-up. I rememeber my conversation with my rheumy (who also teaches at the uni) when I told him I was going to do PhD. He asked me if I was up for it becasue stress and hard work will be a part of my life and if I'm not up for it I should rethink it... Of course the university can make things as simple as possible for you, e.g. have someone to type your answers during an exam if you have arthritis but you cannot do less and get the same degree as everyone else (if you know what I mean). You can of course give your presentation to the tutor directly (without having a major crowd present) but that you should discuss with the tutors personally...
I do not want to do less and get the same degree as everyone else. As a matter of fact, so far I have done more. And I know very well how stressful university degrees are because I already have two - from the UK! So don't worry, I won’t be getting anything I don’t deserve.
I have sympathy for you here. I think some people who have read your post have misunderstood your question and assumed that you're asking about state financial support, rather than support from your university to help you complete your course (such as extended deadlines to cope with the tiredness). You have every right to ask for support from your university, regardless of whether you're a home or overseas student (and I assume you're paying fees, probably at a much higher rate than a home student!). A lot of the support arrangements with the Universities cannot be accessed until after you register, so for some people this can be a difficult start.
I have Lupus nephritis, and I also registered at University this year to do my PhD full time. I was in an easier position though as I'm from the UK and had clear evidence of a diagnosis so was able to access my University's support office straight away. My university have been very good in this regard, and have written up a support plan for me, including asking my tutors to supply copies of presentations in advance where possible so I don't have to spend prolonged periods taking hand written notes. If you stick with it I think you can get the support you need. It is a slow and frustrating process if you don't have clear evidence of diagnosis immediately though; my brother also has a disability and is in the process of going through a long-winded diagnostic/assessment process, and still goes without his university's support so has had to sit exams without extra time allowances, etc.
Go back to your GP for support to manage the pain and anxiety. When I moved, it took a few weeks to get a rheumatology appointment. I would also contact the rheumatology department to see if they have cancellations so they can fit you in earlier and (re)confirm your diagnosis. And of course speak to your tutors and student rep. Be proactive.
Just because you have you have lupus does not mean you can't aim and achieve your life goals; my doctors have actively encouraged me to do my PhD. Don't ignore symptoms though, and Please make sure you rest and not get yourself too stressed and exhausted.
I just feel sorry for the ignorant people who suggested that I shouldn't have pursued this course because of my condition.
So, should I go to the university's DSO with a list of my symptoms / what to avoid? That's what I wanted, some advice on the procedure I should follow.
1) I made an appointment with the DSO as soon as I registered at university. At the meeting they asked about my symptoms and how it affects me and my studies, etc. They asked for evidence of diagnosis at this meeting. I think you should arrange for this appointment ASAP, and take with you whatever documentation that you have as evidence, including the translated documents (they don't have to be very current). I don't think you'll need it, but if necessary go back to your GP for a letter confirming your symptoms (remember, you already have results of blood tests which prompted a referral to rheumatology).
2) The DSO then wrote a report to my department with my support recommendations for time allowances, extended deadlines, etc. This was put into effect quite quickly, so important for your situation.
3) The DSO then contacted my funding body (I'm on a scholarship) to determine who they need to approach for me to secure a disability student allowance to get additional appropriate equipment such as a dictaphone, ergonomic equipment, travel allowance, etc. I'm not sure what your funding situation is like, and if/how this will apply to you if you're self funding and from outside the UK, but I think it is still worth asking about this. The DSO took the lead on this, and helped with applying for Disability Student Allowance. Once I got confirmation that I had been awarded the Disability Student Allowance, I had another assessment meeting to determine what equipment I needed.
So, the first step is to contact the DSO, make an appointment and see what they suggest from then. They will have experience of dealing with overseas students with disabilities, and they will take the time to ask you what your problems are. The course tutors can't ignore the DSO, so having them on your side is crucial. Be politely persistent.
There's a lot you can do to change the situation so stay with it and don't lose hope. Take care of yourself and let us know how you get on!
I am in my 4th and final year at uni and do not have a diagnosis but I was able to access the disability support at my uni. They have loaned me a laptop with a programme on where by I speak into a headpiece and it makes notes for me, and they are arranging a dictaphone so I can record lectures. They have been really supportive. I did have to get a letter from my gp first but all it had to say was details of symptoms and how they affect study.
Have you tried speaking to someone from disabilty support at your uni? I hope you get some support soon, I know how hard it is without support as I kept quiet last year and struggled through. Xxxx
I contacted the DSO at the start of the semester and the girl at the reception was quite dismissive and ignorant about the procedures. I’ve been meaning to ask to see some advisor but I couldn’t spare any time and felt well enough to get through the semester. Now I know that I was wrong, but I wanted to hear from people who have gone through this, I needed advice on how to proceed.
I am not sure if I have missed something on this thread, have posts been deleted or something? Just you said people assuming you are talking about financial support, but I didn't read that anywhere (unless I have misread). Anyway, I was advised to apply to student finance for disability support allowance for costs towards dictaphone etc but was refused due to none diagnosis so that meant I could loan them from uni instead. Is this something you could apply for? As you are at the start of your course this could be a good idea. Maybe something to look into? I really do hope you get sorted. You have done well to keep going and to get as far as you have, don't let anyone tell you any different. You have also worked just as hard and infact no doubt a lot harder than your fellow students to get where you have so you just keep fighting hun, you deserve that degree as much as anyone else!! Big hugs xxxx
Ah I thought so as I hadn't read that anywhere. Though I don't see why you can't apply for financial help, it is there to be applied for for people, like you, who may need it! You pay your fees to be here (at a higher rate when your coming from overseas!) So why shouldn't you be able to get some financial help towards resources that will support you!! Xxx
Hey, Im in Uni too and am suffering massively at the moment with deadlines and coursework, one thing I can say is that you might not be able to always get away with not doing things like doing presentations but there should be people in the disability office who can help to take a little bit of the pressure off. Things like having a note taker and other things which can help you when your studying are available with student finance. I didn't have it last year but I am already finding that it helps so much!!
Just try to keep on top of it mentally, I personally put too much pressure on myself to try and prove I can do as much as others do and end up totally over comphensating for things, just realise when you need to stop and try not to get overwhelmed.
It can get hard but you've gotta give yourself a MASSIVE pat on the back for keeping on going and then when you do well in your coursework an assignments it will feel 10000% better achievement because you know you've worked so hard to get where you have!
It wont always be this hard, it does get easier.
Just take absolutely any help that you can, the disability office at my uni are always willing to help so just dont be shy when asking them for the help you need.
I don’t understand why my post caused such a bad reaction; I don’t want money, although just by being here I give a lot to your country, neither do I want to get a degree without putting the same effort as everyone else. I just asked for some advice regarding university support procedures. Thanks to everyone who replied to that. I feel sorry for the rest…
I don't see any bad reactions here so don't exaggurate. And if you mean my post, then look at the main argument in your post: "The result was to stress myself to breaking point – I forced myself to do a presentation, despite suffering from anxiety, going three days without sleep. " and then "Can somebody help me – how can I convince them that I must avoid stressful conditions, like any form of public speaking..."
You cannot avoid stress and stress related to public speaking and anxiety attacks affect many people. I'm exactly like you are and public presentations mean no sleep, days of diarrhoea, hair loss, joint swelling etc. but to be successful in my field I cannot avoid them and as such it never crossed my mind to ask to be exempt from that, especially since everyone else doing my degree have to do this too. Hence my quection what your subject was.
And btw. comments such as 'I feel sorry for the rest…' are certainly not appreciated and not welcome. You asked for opinion on the contents of your post so be prepared to listen to what people want to say without such immature rcomments. Otherwise, be more careful about what you write in your post.
PS. no need to be sorry for any of us, becasue we certainly are not sorry for ourselves.
I do see your point about presentations. As they are part of the assessment for your modules you could not really be exempt from them. I suffer with anxiety but so does one of my friends and she is not a lupus sufferer. She gets really anxious and worried over presentations and loses sleep over them but she would never be asked to be exempt from them as we all need to do them as part of the course unfortunately. Xx
I certainly wasn't thinking you were after money. Sorry if I gave you that impression. I just know that the system did not do much (anything) to support non EU students at the university I taught at. I had a self-funding dyslexic PhD student from the USA who got NONE (that's right NONE) of the support that home students with the same condition got. I am talking about things like a mentor, and extra time etc - not money. She finished her PhD - and passed, no thanks to the University.
Dear SRamkin, I refer to your last comment you made,I made an original comment in answer to your initial question about the problems you were experiencing and yet whilst you are happy with the answers and subsequent responses from yourself you have stated that others were abusive, and yet have us as ignorant which In itself abusive. Whilst I can empathise with condition I made many a suggestion similar to those expressed by others on this thread, and just because we may explore answers that aren't to your liking does not them abusive in anyway, it's a sad that you felt this way but my answers and subsequent questions posed were intact valid, however I apologise if you we're offended.
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