When you are living with epilepsy, it can be hard to be honest without feeling judged. Pretending you are not struggling can seem easier than speaking up about seizures, stigma, medication, or your mental health.
Being open can be even harder when you are talking to professionals. You may worry that your teachers might think you are making excuses, or that doctors think you are exaggerating.
You may not want to make them feel like they aren’t supporting you enough.
However, open communication with the professionals responsible for your education or health is the only reliable way of getting the support you need and deserve.
Why honesty can be hard with epilepsy
The fear of being judged when talking to professionals about your epilepsy often comes from past experiences. This feeling is very common and can occur for many different reasons.
One young person with epilepsy felt like speaking up was a pain to those supporting them:
I felt like I was a burden or I was annoying epilepsy nurses.
For another, the emotional side of speaking up about their epilepsy made it hard to be honest.
"I had to explain my whole background to these new people that I didn’t know and explaining the background is kind quite emotional."
If you don’t feel heard, or are sent to explain yourself to another professional, it can be scary to do it again.
It’s also common for you to feel like teachers, nurses, doctors and other professionals don’t understand epilepsy or how it affects you. Even if they do, they may not understand how certain comments or actions can make it harder to be honest.
Check out the #UnderstandMyEpilepsy campaign
For one young person, having meetings over Zoom felt impersonal and made it difficult to speak up:
"It made me feel like I hadn’t been seen. It’s made me feel like I hadn’t been understood properly."
These are common experiences. But it’s worth speaking up anyway.
Why it’s worth speaking up
No one understands your epilepsy better than you. You know how your seizures and medication affect your mood, sleep, focus and health. Unless you can be honest with the professionals you speak to, any issues you are having are unlikely to get better.
For example, certain medications have common side-effects. If you speak to your healthcare professionals about it, they may be able to change your medication or manage your side-effects.
Alternatively, you might be worried about your seizures affecting your exams. Being honest with your teachers can help them to tailor your exams to your needs.
Find out more on the Study Hub
Why is it important to talk about mental health
It’s not just about your medical or learning needs being met. Being honest will help you be understood and feel better as a result.
It’s better to talk about it… don’t bottle your feelings up because it makes it worse.
As another young person put it:
"It affects your mental health massively… it is incredibly difficult to fight by yourself.”
Keeping your feelings to yourself can lead to isolation, which can lead to further mental health challenges. Sharing your truth, particularly to a professional who can help, can stop your problems from getting worse.
What good support feels like
It’s common to feel like the professionals around you have let you down when it comes to understanding your epilepsy. If you can be honest with them about how you are feeling, you may be surprised with how your support changes.
One young person said:
“They really listened to me. They really respected what I was telling them. They never judged it once... they made me feel safe… they knew how to support me.”
After you are honest, you are more likely to see consistent support:
“He listened… he was very supportive and was always checking in on me.”
Top tips for being honest with professionals
Whether you want to know how to talk to your doctor about mental health or epilepsy, or how to ask teachers about exams or school trips, these tips will help you speak up clearly and confidently.
Communicate in a way that you are most comfortable
Speaking one-to-one to a professional can feel intimidating. If you’d feel more comfortable with a parent or carer there, ask them to join you. If you’d rather not speak directly, write your honest experiences down.
Keep records of how you are feeling
An up-to-date Individual Healthcare Plan will let the professionals supporting you know about how your epilepsy affects you. You should also keep accurate seizure records, including how your felt after your seizures and details on how you recovered.
If you are noticing new symptoms or growing concerns, write them when you are experiencing them, so you have a clear picture of what’s happened, when it’s happened, and how it’s been affecting you.
Be clear about what you need
Professionals want to support you, but they’re not mind readers. If something isn’t working, try to say exactly what would help instead.
For example, you might need more time in exams, a quieter space to recover after a seizure, or a different way of communicating about your care. Being specific can make it easier for professionals to take action.
Ask questions if you don’t understand
It’s okay to not understand everything straight away. If a doctor uses medical terms or a teacher explains something quickly, ask them to explain it again in a way that makes sense to you.
You deserve to fully understand your own epilepsy and the support you’re receiving.
Take your time
You don’t need to share everything in one conversation. If it feels overwhelming, start with what matters most right now.
You can always come back to other things later, once you feel more comfortable.
Don’t be afraid to seek other support
If you feel like you’re not being listened to or getting the support you need, it’s okay to speak to someone else. This could be another doctor, nurse, teacher, or a specialist who understands epilepsy.
Getting a second opinion or talking to a different professional can help you feel heard and make sure you get the right support.
Remember: you deserve to be heard
Your experiences are real and valid. Even if you’ve felt judged before, that doesn’t mean you will be again.
The people supporting you are there to help — and being honest gives them the best chance to do that.
