[Ocean1]

Hi all

Im getting myself into a bit of a pickle here, and could do with some guidance from you lovely people

i started back at uni in Sept, i told my course manager and my lecturers about me being sick, but kind of played it down as i didnt really want any 'special' treatment etc and just kind of wanted to be 'normal'
I have been doing pretty well as i only have to attend uni once a week and my lecturers have been really good at emailing me missed work etc if i didnt make it to a lecture. That was until we were given an assigment which i struggled with and had to apply for extenuating circumstances to try and get an extension on the deadline date.
Due to me filing for extenuating cirumstances i now have to attend a chronic illness case conference this Fri afternoon EEEEEKKKK! with my lecturers, course manager, head of uni, disability officers and anyone other tom, dick or harry who feels the need to attend :worried:
I know this is for my own good and theyre only trying to help and see if they can offer me extra support BUT i really dont want to go :worried: im quite a private person and dont like 'moaning' about being ill, and i also dont like facing up to the fact that i am poorly and may need help, im very stubborn :blush: :lol:

So any tips on how to cope with this meeting and not to curl up in a ball, not answer theyre questions and hope they go away :rotfl:

Thanks,

X x X x X x X x X x X x X x X x X

 

[Katharine]

Hi there,

I'm sorry to say but your post actually made me laugh a bit - sounded so much like me - playing things down and not wanting to explain/talk about it to anyone :rotfl:

Thing is, I have recently come to the conclusion that I really wasn't doing myself any favours doing that. I mean, sure, denial is nice in some ways but as is people have enough trouble grasping what living with lupus is like and if we play it down they tend to think "oh, it's alright then" and completely forget about it.

I talked to my GP recently and it kind of hurt when he said I should apply for "handicapped" advantages. I was in shock. I have been doing a tiny (ridiculously small) amount of work this last year but when I face up to it I have to realise that I keep having two/three/four month periods when I just can't. Then I get a couple of months feeling better and feel that I can take on the whole world!!

He pointed out to me all the things I can't do and that holding down a "normal" job was just not likely to happen. I had an awful time getting my head around it but it's OK now, like something that has to be done and faced and once it is it's OK.

At the end of the day, the advantages are there for you, they're to be taken and used. I think that explaining that you don't want to make a big deal of it and how important that "normality" is to you should be easy for anyone to understand... what is said in the meeting should only be discussed among teaching staff and those who need to know, it doesn't need to extend to "everyone".

I'm afraid I don't have any uni-specific advice as I have to be the least educated person I know :lol:

hugs :hug:

Katharine

 

[Fairy]

Hello!
I was diagnosed just before the start of my second year of uni. I'm also incredibly stubborn - I was diagnosed in the september, and told by my doctors not to go back until at least after christmas. Obviously I completely ignored their advice and was back within a fortnight of leaving hospital... Probably wasn't the best plan :lol:

Anyway, I completely played down how sick I was/had been - didn't complain, and only told my personal tutor the bare minimum. Looking back, I think I made things a lot harder on myself than they could've been, because I wouldn't accept help (still won't, if I'm honest). I would hate having to go to that kind of meeting, so I can completely understand where you're coming from.

Having said all that, they could well come up with something that will make your life easier. Grit your teeth and go, and do your best to answer their questions - you probably won't be able to get out of it anyway, if you want to get your assignment deadline changed. Basically try and make the best out of an uncomfortable situation, and don't follow my example :hehe: Good luck!

 

[Joandublin]

Oh dear :worried:

I would feel exactly like you do. I would probably want to curl up in a ball as well or crawl into a hole in the corner......

But lets shake all those bad vibes off and face facts... You need that extension and this is the only way its going to be possible for you to get it. So think of it as just another hurdle to get over in order to get your assignment completed. The bigger picture looms ahead and the chances of you meeting up with most of these people again is fairly slim I would imagine.

They are most likely going to want to know how you are affected by your Lupus. Chances are they wont be very versed in the disease so you might want to do some quick research and print them off something succinct and useful for their reading.

Let them do the talking and see what it is they want to get from the meeting. They may ask how they can help you and if so I would suggest that they remain open to possible periods of disease activity which will mean you may have to request some reasonable extra time to complete work. At other times, of course, you will be well able to complete assignments on time. Tell them that the disease is unpredictable and that being the case you will find it next to impossible to predict how you are going to be next week, next month etc.

Its no harm to let them know that you are very uncomfortable at such a meeting (if thats still the case on Friday) and let them know you are a private person who doesnt like to talk too much about your health issues. Also you do have a right to your privacy so dont go volunteering too much information that isnt needed. I know that I tend to 'blab' everything if Im feeling nervous and want to kick myself afterwards.

If all else fails, picture them all naked sitting around the table and hope its over fairly soon!

I do hope it's not too traumatic for you. Think of it like a kind of project and come back here and tell us all about it. Thats your assignment for this week :wink2:

Best of luck and plan something nice for yourself afterwards
Luv n stuff
Joan:rose:

PS...... Remember, that they do mean well at the end of the day.

 

[alimonkey]

I know exactly how you feel. I work in a University and I know it might seem daunting, but they are just trying to help you. You could perhaps explain to them exactly what you've said here, that you don't like discussing your illness and that you find it embarrassing, it does sound like the world and his wife are invited on their side but I guess they are all the people who have some involvement in ensuring you are supported. Unfortunately that is life at Uni, management by committee. Could you take someone with you - maybe a friend who knows you well or someone from the student union? I would absolutely die at being asked to discuss my illness in front of all those people, I'd probably end up with a massive flare!

And if it's any consolation I will be going to Occupational Health myself next week to discuss whether I need any help or support. I hate the fact that I can't do what I used to, I hate not being independent, I hate having to discuss things with other people, butt out! I'm a fairly private person too. Hope it goes OK for you anyway, good luck!

 

[Ocean1]

Thanks guys for all your replies

Good to know im not the only one who likes to play down symptoms and not ask for help :lol:
Argh! so the meeting is tomorow eek! im dreading it, but im sure i'll be fine once im
there, i was going to write down some symptoms etc to take with me, but havent had time, oh well, I'll let you know how i get on!! Wish me lots of luck! i'll need it!

thanks,
x x x x x x

 

[keebler]

Ocean,

Sending you lots of luck your way.:luck:

Hopefully you find it wasn't as bad as you imagined it to be.

Love,
Lyn

 

[alimonkey]

Hope it went OK today, let us know how you got on.

 

[onetay]

I hope that you will see this as your chance to get something in place for the rest of your classes and other things that you might need a little more time to complete. This is not a bad thing it is good that want to work with you as so many look the other way. You do not have to go into great detail about your illness and it might be good to let them know this. It is hard for you to ask for special privileges and even harder to talk about your illness. You have to be a good frame of mind when you go in there and think about the things you do need help with like this project. I know it can be scary to let others in but I really think they just want to help like many of us here on the site. I wish you the best and I hope that you can relax some before the meeting. Good Luck.

 

[orangelily]

Hi Ocean, I hope the meeting went well and you didn't stress yourself out.

 

[Pink Pearl]

Hi Ocean,
I totally understand your reluctance on talking about your lupus. It is such a misunderstood disease that most people, often even those closest to us, do not how it can affect one.

When I was taking anatomy & physiology, my professor had me do the teaching of lupus and other autoimmune diseases! Oh my!
It made me research this disease as far back as I could, and to learn much more than I never even suspected. Initially it was hard for me to talk to the professor about my having lupus. As I did it more, it did get easier.

One thing the office did give me was duplicate paper so that I could have a classmate take lecture notes for me if I could not be there. I did have to use it a couple times, and it really made a difference for me.
Sally

I hope your session went well. Let us know how it went.
Sally

 

[Ocean1]

Hello all

Thankyou again for all your replies, much appreciated and good to know im not alone in being stubborn and reluctant in getting help :lol:

So i went to the meeting on Fri, and it was pretty daunting there were 12 people plus me in the meeting but to be honest most of them were ok, there was one big mouth, know it all, that kept on interuping everyone and answering his phone during the meeting also when asked what my condition is i said 'lupus...' and before i could say anything else he jumped in and waffled on about how he knows all about lupus, fibromyalgia, cfs and other chronic conditions and went on to brag about how he is so helpful and the uni was so lucky to have him what a wally!!

But on a positive note i hardly had to speak :lol: and just kind of got spoken to for about an hour and they all discussed how they might help and then ushered into another room to fill in forms and told to go back for another meeting on Tues for an 'assessment of my needs'

To be honest i found it quite funny :lol: it was almost like they all had nothing else to do and then when they had found out i was ill it was like 'jackpot' for them, now they can feel like theyre doing some work :rotfl:

My tutor and senior tutor both caught me afterwards and told me that i didnt have to go along with all the stuff in the meeting and they would tell them to butt out a little bit, if i wanted too :rotfl: they said i looked a little overwhelmed and lost :rotfl:

But atleast its over now, and hopefuly theyre going to put in place help for me if i need it e.g extra time for assignments/essays etc, they also said i might be eligable for a laptop and loads of software :wink2:

Thanks again for all your kind words
x x x x x x x x x x x x x

 

[Katharine]

Hi there

Glad to hear it went reasonably OK for you

Katharine

 

[Ocean1]

Eeeeek!

Ive got my 'needs assesment' tommorow, im dreading it!

Wish me luck!
x x x x x x x x x x x x x x x

 

[Katharine]

Good luck!!!!!

I'm sure it'll be fine - just make sure you take full advantage of it. The system is there to help you, let it help

Katharine

 

[pollianna]

What are we like :lol: Honestly I am as stubborn. I recently had a look around me. I work 12 hrs a day with this illness and some people in my City get dosh fro the goverment, free rent and all that the health service can provide for not a jot of work. They have little "jobs" on the side and drive a better car than me

I say take everything on offer, every extended deadline going. Don't feel less than because you will surely be admired for working through this. It may be the last time you are offered such support. Weall seem to be such giving people who have this illnss, we need to learn to take a lil now and then

Best of luck with it xx

PS, take the most expensive laptop :lol:

 

[alimonkey]

Eeeeek!

Ive got my 'needs assesment' tommorow, im dreading it!

Wish me luck!
x x x x x x x x x x x x x x x

You've got absolutely nothing to worry about. They will ask you questions about your health, how it affects you, what you do to cope with it. Then they will probably make some suggestions on things that can assist you. This might be allowing you extra time for assignments, allowing you extra time during examinations, providing you with computer hardware or software to help with your study. For example, if you experience joint pain and find it hard to sit at a computer, they may recommend that a laptop be bought for you to allow you to work at your own convenience. They may recommend that a printer be purchased so you don't have to go into college to print things out. They may recommend some software like mind manager or screen reading software if you have problems with attention or concentration.

Do not worry about it, be honest about your condition, and how it affects you. They are there to help. I know it's horrible, and sometimes its hard admitting that you need help, but it's for your own good.

Good luck, take everything they'll throw at you, that's what I say. I had a similar assessment as a Masters student two years ago and they were incredibly helpful.

 

[Joandublin]

Best of Luck! Tell them you have dietary considerations, i.e. you need to eat Lobster every day for lunch :wink2::hehe:

Luv n stuff
Joan:rose:

 

[alimonkey]

Best of Luck! Tell them you have dietary considerations, i.e. you need to eat Lobster every day for lunch :wink2::hehe:

Luv n stuff
Joan:rose:

:rotfl: wish I'd thought of that! I was given an allowance to buy a laptop and printer (they wrote me a letter telling me how much I could spend, then I bought it and claimed it back), and they also gave me screen reader software as I had problems with attention and concentration. I also had an allowance for consumables. This was two years ago when I did my MSc.

Let us know how you get on.