Starting university or college with cardiomyopathy
Starting university can be an exciting time but may seem a little daunting when you have cardiomyopathy, especially if you’re moving away. Remember, having cardiomyopathy does not define you or limit your potential for success.
Things to consider when starting university or college:
- Locate the campus disability support service. They can help you navigate campus life and access any relevant support available.
- Speak to your university about reasonable adjustments before you arrive. You can also discuss their policies for deadline extensions in case you need extra time for assignments. Learn more about reasonable adjustments at Scope UK
- You may be able to get financial assistance, such as disabled students allowance (DSA) to help with additional costs.
- If you’re moving to a new area for university, make an appointment to see your cardiologist at least six months before you move. You may need to be referred to another cardiology team closer to you. Ensure all necessary tests have been done and get copies of your clinic letters and test results. Get a health care plan written by your Nurse Specialist, this should outline your condition clearly, worrying symptoms, treatment and what to do in an emergency.
- If you take medication, make sure you know the name of the medication, how it is taken, any side effects and whether any foods or drinks should be restricted.
- Know how to get your repeat prescriptions via local pharmacies. Keep note of your medication routine and when your prescriptions need filling in advance. Depending on your age, you might not be able to get free prescriptions anymore. Consider whether a prescription prepayment certificate might save you money.
- Consider wearing a medical ID bracelet or carrying an ICD card (if you have one) in case of an emergency.
Know where to locate a defibrillator on campus or near to your halls. If you have flatmates, make them aware of your condition and how to help you in an emergency. - If you have an ICD, make sure you check in with your devices team and know how to access and carry out remote downloads.
Socialising
Moving away from home and meeting new people is a time for growing and learning. You will need to keep a few things in mind as you experience new things:
- If experimenting or socialising around alcohol, tobacco or recreational drugs it’s important to know they may cause irregular heart rhythms and other cardiac complications.
- It's also good to be aware that caffeine can also promote arrhythmias. Energy drinks contain large amounts of caffeine and are best avoided.
- If you become unwell, don’t ignore new or worsening symptoms, including fevers and chills. Usually, earlier diagnosis and treatment are best.
Finding the right balance for you
Keeping up with a busy life can sometimes be exhausting so being aware of your limitations is important. If you find you are having to spend the weekend in bed after a full week of university, have a look at your workload and see if you can adjust your timetable. You can discuss this with your university and see what solutions there are.
University can be a busy time, but try and ensure you get enough sleep, and enough to eat. You might find that if you push yourself too hard for too long, it can take quite a while to recover. If you do get ill, be kind to yourself and allow yourself time to rest.
Talking to other young people about cardiomyopathy
When talking to other people about your cardiomyopathy diagnosis, it can sometimes be worrying to think about how they will react. You may find that when it comes to having that conversation, it can seem like a bigger deal to you than perhaps it is. Try not to build it up too much in your head, most people will only want to support you and appreciate knowing you better.
“We can’t control people’s reactions, so don’t get too anxious about telling people. It seems like a bigger deal to you than it does to anyone else. Can you remember when someone told you something personal about themselves? Hopefully, you were supportive of them, but it didn’t massively change or redefine the person you know them to be. When we tell people, it shouldn’t change the way they see you, it should just give them a deeper insight into who you are.” – Cardiomyopathy UK Youth Panel Member
FAQs
Once you have your place, consider reaching out to the university to see what support they have. You may be able to have an assessment through student services that will help the university discuss what support they can offer you.
No. A growing number of people don’t drink at university for health, cultural reasons, or personal preference. If you’re not drinking alcohol, you could have a non-alcoholic equivalent.
You could also consider joining societies that host activities that don’t necessarily involve drinking. Some universities even have non-drinking societies!
No. You should be able to pick up your medication in your new city, even if you don’t move hospitals. Similarly, if you change hospitals to be closer to your university, you should still be able to pick up medication back home.
As much as you feel comfortable with. You may find it helpful discuss the essentials, such as adjustments to support your exams and assignments, but it isn’t essential. If you’re intending to do sports or join a sports society, it would be advisable to inform the organisers so that they know how to support you in the event of a medical issue.
- Try setting out your medication for the next day the night before, or consider getting a weekly tablet box, these allow you to organise your medications at the beginning of the week and keep track of what you’ve taken.
- Set reminders on your phone. You may find it helpful to use an app that requires you to tick off a task as complete you have taken your medication. If you have an iPhone, you can set medication reminders in the health app.
- Try putting your medication in the same place and take them at the same time each day to get into the routine.
- Finally, try not to run down your medication, try to keep some spares in case you run out. Request your prescription at least 7 days in advance.
Our website has a range of information resources that might be helpful. You can also speak to your healthcare team, or contact our specialist nurse helpline here: