Chronic medical condition whilst at university - any experience/advice?

[Lilymaid]

DC has just been diagnosed with a serious medical condition and is in 2nd year at university. Has anyone got any advice or experience? DC will probably have to defer a year and start 2nd year again next October if not well enough to continue this year. We've already discussed options with the university's student welfare officer but wonder whether trying to carry on even if allowance is made for mitigating circumstances would be worse than having to return home (very boring) to recuperate. University is 3 hours drive from home.
The illness should (hopefully) be kept under control by medication but is life long.

Is the course modular?
Could DC do some modules next term rather than all?

I think that the course isn't modular and that each course runs for either one semester or two. Unfortunately, DC has now been in hospital for two weeks and has already missed one short exam. The end of semester exams will be in January and the next semester starts immediately afterwards. The consultant reckons that DC will not be well enough to get back into full time education until the end of February. This means that DC will have only done around 6 weeks out of 11 teaching weeks for semester one and will miss the beginning of semester 2. If it had been 1st year, it wouldn't have been so bad as much of the 1st year seemed to be going over stuff that DC had done for A2.

Student loan company finances an extra year.
The solution depends on
-what the consultant advises
-how DC feels
-what the university offers
-what DC wants

the medical back up at uni might be a factor - it is not always the same as when at home so there might need to be transfer/joint working between the home and university medical teams for DC to be comfortable going back.

I would try and get back asap but part time and aim to take some of the year2 exams in the summer if only because its good for self esteem and the brain and keeps his mind off being ill and even if he fails the year he can still repeat. Because there are mitigating circs the university might give him the option of taking some exams at the end of the summer holidays.

But so much depends on the university - a proper detailed discussion with his tutor is the first step, as he will know the options best. Then there will be an academic support unit which might help with distance learning aspects.

Its easy for those at a distance to give advice. I wish your DC better asap. Having a long term condition can mean readjustment of lifestyle which isn't always easy but the young are very resilient.

We are hoping that DC gets out of hospital in a week or so provided that medication is kicking in well. I hope DC will be well enough to continue the course as sitting around at home (when we are out at work and friends are at university) would be very dispiriting. There is an opportunity for care to be shared between teaching hospital in city where DC is a student and our local (major teaching/research) hospital and both have special units for teenage/young adult patients which help them carry on studying whilst being treated.
Keeping up self esteem is important - DC was very fit and apparently well until a couple of weeks ago so this has come like a bolt from the blue and DC (as well as us) need to adjust psychologically to this.
Hopefully DC can now start talking in depth with the university about options and find the best solution. We shall try to be involved in any discussion, though as DC is over 18 we can't insist on that. DCs friends have been exceptional in visiting every day so am sure that there will be plenty of informal help.

this may be useful

kidshealth.org/teen/your_mind/problems/deal_chronic_illness.html

Lilymaid
Just wanted to say that I hope your DC gets through this as quickly and effectively as possible. DS has just started Yr 2 at uni, and has had surgery which knocked him back for 2/3 weeks. He has had to work like mad to catch up, and as you say, Yr. 2 is much harder than Yr. 1. The situation you're facing makes my worries seem insignificant .

I was a mature student until last year. Student services will liase with the university for a support plan to be put in place which will negotiate extensions for assignments, extra time in exams etc. Exam wise, it depends on the course. Some of them make it impossible for students to progress onto the next level unless they have passed everything for that year so if he misses the main exam and then the resit he may have to retake the whole of the module, meaning he'll have to go part time until he's passed it. This causes huge problems with funding as he'll be unable to access most of the student support he has now. How things stand at the moment, students who need to take time off for medical reasons are not entitled to any benefits as it's thought that their student loan wil fund their living. I can put you in touch with a parent who is trying to fight this if you send me a DM. There's extra funding once he's back at uni for students with additional needs so it will help if he requires a not taker for example. It comes under the disabled students allowance.
If his condition is expected to last longer then 6 months (there are certain ones like MS and HIV which automatically qualify for DLA) and causes additional needs then he should apply for Disability Living Allowance.

I hope he's as well as he can be very quickly. The Students Union at his uni will be useful for advice as well.

I hope DC lets you into the discussion as presumably he/she has put you down as next of kin. It is always useful for people to go into important discussions with friends/family as the more ears the better, because it is easy to forget what is being said and easy to forget to ask questions. Ask the consultants to send DC/you copies of all letters and results and prescriptions and ensure DC keeps a file, with a duplicate set for you. Those tag things are a good idea.
I burst into tears when my own perfect DD was diagnosed with hypothyroidism after having been very ill. It took a while for things to stabilise but they did and now she is fine though we keep her repeat prescriptions at base and I send them onto her as its easier. But I grieved for ages. Not in a loud noisy way. Just inwardly. But now she is at a top university and having a wonderful time! I downloaded stuff about her condition from the BMA website and we went through it together when she was getting better , so she understands the biology and what the medicines do.

Thanks for all the suggestions and kind words. We have had to fight back the tears a lot in the past couple of weeks. Big brother has flown in from Europe to visit - and also to reassure himself as it must have been just as much a shock to him. He has spoken to all the medics (including friends who are now junior doctors) and has looked at all the information available online whilst we have not gone beyond what the consultant has told us and the helpful literature that is available via the hospital.
DC only found out about the medical condition having gone to A&E because of a (possibly unrelated) sports injury. The medical staff were astonished that DC could have been playing sport, going clubbing and living a typical student life (yes, even going to the library sometimes) with the condition!
Next step is to get DC out of hospital and to discuss the academic possibilities with the university ... and to thank DC's wonderful university friends for all their support.

not a chronic illness but my flatmate had a serious illness during university and she really really struggled with going home and graduating a year later.
she lost all confidence in herself and was very down. she wasn't allowed to work for complicated financial reasons and i think she was mainly bored.
i would advise trying to find a workload he can manage (even if only one module in a semester) to keep in with uni life.

This happened to me at uni and it was very very difficult. She will need a lot of support best wishes xx

A quick update. DC was discharged from hospital yesterday (though has to attend regularly for rest of life). DC wants to sort out the university alone and we can't intervene without permission as DC is over 18. We may have to get big brother to help there if our assistance is declined - big bro has just completed MSc in same subject and (hopefully) knows something about university processes.
Good luck Betelguese with your DS and thanks for advice about university rules etc. Carrying on (with allowance for mitigating circumstances) and taking some exams later than normal may be the best solution. Thanks all for your best wishes.

If DC is determined to handle it on his own then I'd just advise him to be completely honest and upfront with his tutor and keep them up to date regularly by email as then everything is written down. Most Unis are pretty good if you keep them informed it's when students go silent that problems arise as its harder to put in place allowances after the fact (I work in a uni often dealing with situations like that).

It is hard taking a year out due to illness. I went down a year at School and extended my degree by 6 months due to chronic illness and it's tough, but I got better results by putting my health first.

The uni won't talk to you about DC's specifics without permission but they should be able to advise you about all their policies and procedures - mitigating circumstances, progression rules for the specific degree, suspension policy, fitness to study etc. then you can be informed and try and support from the sidelines. If you want any specific advice feel free to message me.

Ladymedea - Thanks (hope your DCs are well )
DS went back to university and has had a meeting with them re mitigating circumstances. We'd hoped he might get some short tutorials on what he'd missed, but this hasn't (yet) happened - but as his DB has recently finished an MSc in the same subject, he can pick his brains over Christmas.
He spent a lot of time in the library catching up and preparing for an exam that he'd missed and is now back home. He has even gone back to his pre-arranged holiday job - with a very good employer. It all seems strange: he has been diagnosed with a frightening condition - but providing the medication continues to work he should be able to lead a fairly normal life.
Although I am worried and will never stop worrying about him, he has shown remarkable maturity and determination to get on with his life and to work hard for his degree.

lilymaid thanks for the feedback. Living with a long term condition means being more organised than most and changing the pace but life is often very liveable these days with modern medicine. Whereas in the dark ages half of us would be corpses the fact is that it is no longer the dark ages !!!!!! (Thank goodness and hats off to the nerds that do the research and the clinicians who implement it)

Lily, I hope your sons health is improving.
DS1 was diagnosed with UC at the christmas time in his final A level year. His dad and I were gutted after reading too much on internet!
He went onto university and got extremely ill over his first year ( which we didn't appreciate until the easter time) and although he was supposedly being looked after by a private consultant, he wasn't being looked after properly.
He went to his university GP at the end of his first year exams to get a referral for a second opinion who was shocked and appalled at his state and arranged an urgent blood test that the hospital flagged as urgent that very afternoon and she called DS1 back to her surgery.
To cut a long story short we picked him up the following day and brought him home with extra medication and he started seeing a new consultant who was wonderful. It took him really until the end of November for him to be as well possible with his steroids dropping gradually off and a change of medication. His friends were worried that he would return for the second year, so they were really pleased when he turned up looking well again.
He graduated last year after a 4 years masters engineering degree (with a first!)
He is very driven and even over that summer when he was not 100% only had 7 days off from his summer placement which sponsored him through university.
It sounds as if your son too has that driven gene with his library revision and straight into his holiday job.
Very best wishes to him!

the thing about having the driven gene is that it can set these conditions off. a balanced lifestyle is as important as medicine and possibly readjusting life and career goals.

Funny, funny you should say that DS1's first consultant said that UC can affect high achieving perfectionists.
Just last week in the papers there was Darren Fletcher, the Man Utd footballer ( giving up football in the short term to go into remission ) and the Lewis Moody's (ex England rugby captain) names coming up as UC sufferers. Not forgetting Steve Redgrave!
Had to text DS1 as I think it is good for ordinary young people to know and it brings what can be an embarrassing condition to peoples attention. Its probably not always the sort of thing easily discussed with fit and healthy friends and colleagues
I have to say that although DS1 is an achiever he is also a bit of a lad, a socialiser, living in a flat in London with 2 uni mates, an investment banker (!) with a lovely girlfriend.
Seems to live life to the full at the moment as he seems to be well controlled medically (touch wood).

I was diagnosed with severe Rheumatoid Arthritis in my 1st year at uni and had to defer a year whilst I sorted myself out. Your son is very lucky that he has a supportive family behind him - that was the hardest thing for me, as i didn't. I don't know if it's appropriate or not but the university disability service were invaluable in helping sort out extra time, support and equipment for me. The time and support was more important than the equipment tbh. They also arranged for me to see the university counselling service which really helped me get my head round this life changing disease. They supported anybody with a disability which is defined as a physical or mental impairment that has a substantial or long term adverse effect on their ability to do day to day tasks. It was really hard to go back to uni after a deferred year and every bit of support is really helpful. I did complete uni but it was difficult and without determination stubbornness I wouldn't have got there as there were many many low points. I did however get through it and currently my disease is quite well controlled with some nasty toxic drugs and for the most I can get on with my life. You might want to google online support/discussion boards for your sons condition as I've found the arthritis care one brilliant for niggling questions and general understanding from others going through similar stuff.

beans beans are good for your heart
the more you eat the more you fart
the more you fart the better you feel
so lets have beans for every meal.

I heard this on the radio this morning and immediately thought of this thread.When applying for jobs do not put condition on application form and get appointed on merit, then let occupational health know on starting. Do not mention to new colleagues until sure they can be trusted.

That is my view but what do you think?