You’re off to University – home of watered down beer, late nights, new friendships and learning curves both academic and personal. You’re probably a mixture of nervous and excited, and might not be thinking about your condition at all!
Here are a few useful things to think about before you go, and when you get there:
Before You Go
Should I transfer my hospital care?
Already in adult services? With three years stretched out in front of you, and a 5-hour Megabus journey home, it can be tempting to consider changing hospital to one in your university town. Realistically though, a 5-hour bus trip sat next to somebody snoring will be nothing compared to the time and energy it can take to transfer care between hospitals!
Speak to your current team before you go to see what they think. It may well be that all you need to do is time your appointments for when you are back home for visits/holidays, and they can help you organise this. You may also be able to have your appointment with your doctor via Skype – don’t be afraid to ask! Make sure you have the contact details of your specialist nurse/doctor for any urgent queries or worries whilst you are away.
Still in children’s services? Here’s some help in thinking about when to move out of children’s services and into adult care
Disabled Students Allowance
One of the ‘joys’ of having a rare endocrine condition is that you don’t always know when problems are going to ‘kick off’. It is possible that you might, at some point, need to take time off for appointments or surgery, if you feel unwell, or if you feel anxious or low. Your condition may make you eligible for Disabled Students Allowance (DSA). You don’t have to be registered as ‘disabled’ anywhere else for this.
When applying for your Student Loan, you can fill out a DSA Application too, which is assessed separately to your loan. If approved, support can range from having an assistant with you in lectures, to a new laptop with specialist software. It’s worth applying for as it may become useful at a later date. You’ll need to get ‘evidence of your condition’, such as a letter from your hospital doctor, specialist nurse or GP).
The Disability Advisor: your new best friend
Before you start, or asap after you do, make an appointment to see one of your university’s Disability Advisors. A lot can happen over three/four years, and these are the people to help you navigate university processes such as if you need to apply for ‘extenuating/special circumstances’ or time off. Scans, blood tests and surgery are unfortunate necessities with your condition, and might impact on your ability to take exams, or complete coursework deadlines. Let your Disability Advisor know straightaway if you have anything coming up that might impact on your studies or placements.
Universities are generally very supportive of students with medical needs, often making ‘reasonable adjustments’ to deadlines, attendance or placement requirements with the support of your Disability Advisor. Don’t forget that your hospital doctor or specialist nurse can also help you arrange for regular appointments to be in your holiday periods or held via Skype too, so do ask.
Not the ones that Mikey down the corridor will have (i.e. the guy who always seems to have that smell coming from his room). We mean any usual prescription medicines that you have to take (if indeed you need any at the moment). Ideally, make sure you’ve got enough stock of your drugs to last you through the term. Don’t leave it to the last minute if you do need a new prescription at university, as some chemists may not usually stock your drugs and may need to order them in specially, which can take time.
Beat The Queue For Fresher’s Flu
One of the very first things you should do on arriving is sign up with the campus GP. Be prepared for the fact it’s unlikely they’ll have heard of your condition, so brush up before you go on your best ‘me and my condition in 30 seconds routine!’ If you can, sign up before Fresher’s Week to beat the queues once the semester gets going. Leave it any later than Freshers Week and there will be queues with every first year student knocking on the surgery door.
You can get a flu jab at your usual GP before you go, but even so you might get ‘Freshers Flu’ anyway – and it does pass! Unless you can’t take them together with your usual medicines (check with your nurse/doctor before you go if you are unsure) dose yourself up with the cold/flu remedies, and take any extra ordinary meds that you need to get through. Any worries, talk to the GP or your usual specialist nurse.
Who should I tell what?
This is a very personal decision, but the rule of thumb is to tell people whatever you are comfortable with about your condition (including how you feel about it) when you feel ready.
If you live with something potentially life-threatening (i.e. hydrocortisone or insulin dependency) then you might want to talk through with your Disability Advisor about letting someone on your corridor or in your student flat know what to do in an emergency. You might want to consider a piece of MedicAlert™ jewellery too, but don’t rely on this alone.
Remember: A lot of students manage all sorts of health conditions at university (e.g. epilepsy, diabetes, etc) so you definitely won’t be the only one .
For women: Give some thought to contraception before you go to university, and talk it through with your hospital doctor. You can ask to speak to them privately in an appointment even if you usually go with your parent (just ask), or contact your specialist nurse separately to ask about this.
Your campus GP might be happy to prescribe oral contraception for you (i.e. ‘the Pill’) but it’s a good idea to talk this through with your usual hospital specialist to see if it’s best for you given your particular endocrine condition. It would also be wise to speak to them in advance should you ever need to use the morning after pill about how it might impact you, and what else to bear in mind.
If you do get pregnant, the University Counselling Service or Student Union Advice Centre can help you think through the implications, what the right choice is for you, and how to get help for whatever you decide. It will be important to let your hospital doctor know about the pregnancy, in case there is a risk that it may have an impact on your endocrine condition. Any baby of someone with a genetic endocrine condition has a risk of inheriting that condition too. There is more information about this in our ‘Starting a Family’ booklet here.
Men and women: Condoms are usually freely available at university, so grab yourself some! Not only do they prevent pregnancy, but (two for the price of one!) they prevent sexually transmitted diseases. Which is nice.
This time we are talking about Mikey’s stash. If you take regular medicines, be particularly careful if you try any illegal drugs. Hormone-related conditions (that’s yours!) can affect your mood, and illegal drugs tend to do the same. Medical manufacturers don’t test how ‘illegal’ and prescription medicines or functional tumours mix. It’s therefore impossible to know how you will feel after taking or smoking anything, or whether it might stop your usual medication from working properly or make your tumour worse.
If you do end up trying or using something and you feel anxious, worried or unwell, tell someone and get help straightaway. You won’t get into trouble, and if you need to go to hospital, let the doctors treating you know about your endocrine condition and any medicines that you take, as well as details of the drugs you have used.
Your hospital doctor or specialist nurse are ready, willing and able to discuss this potential aspect of university life with you. They can be particularly helpful in explaining specific reactions of your particular prescribed medicines with illegal drugs to help you minimise your risk.
Don’t forget that alcohol is a drug too, and if you end up throwing up after ‘one (five) too many’ you may need to adjust your next dose of medication. You might be able to check on the leaflet in your packet what to do, and you can also talk through how to manage this with your specialist nurse before you go ‘just in case.’ This ‘stress-dosing’ can also be helpful to know about if you get unwell, or have a tummy bug. If you have an adrenal tumour you might want to go easy on the alcohol to avoid making any symptoms worse.
……..And ‘rock and roll’
Your usual routine is going to be pretty challenged by drinking games, events, noisy neighbours, late night chats, 3am bedtimes and 11am mornings! This can be tiring for anyone, but might be particularly challenging if you need to take medication at regular times, or if you have to manage your mood, diet or energy carefully. Fear of Missing Out (FOMO) can override your need for sleep, so do look after yourself. There will always be more nights out, late night film watching and pizza ordering – but there’s only one of you, so don’t let FOMO get out of hand! Adapting to university life takes practice, and money (or rather the lack of) can always be the perfect excuse for an early night if you need one.