Getting an epilepsy diagnosis can leave you with answers, but also many new questions. You may be waiting for more tests, a treatment plan or medication to work. Life may not feel settled yet.
Many families describe this waiting period as the limbo phase. It can feel uncertain and overwhelming, but you do not have to face it alone.
What is the limbo phase?
The limbo phase is the time between diagnosis and finding the right treatment or support.
You may be asking:
- What happens next?
- Will things get better?
- How will we cope while we wait?
There is no right or wrong way to feel. You might feel worried, frustrated, confused or relieved to finally have some answers. Your feelings may also change from one day to the next.
Why early support matters
The time during and after diagnosis can be a big adjustment for the whole family. Getting support early can help you understand what is happening and feel more confident about the next steps.
In fact, 38% of referrals to Young Epilepsy happen within 12 months of diagnosis. This shows how important information and support can be during this time.
Early support can help you:
- understand your child’s epilepsy and what may happen next
- feel more confident about managing seizures and medication
- find emotional support for your child and your family
- connect with people who understand what you are going through.
You are not alone
You do not have to wait until everything feels settled before asking for help.
Young Epilepsy offers information, support and opportunities to connect with others. We are here for children and young people with epilepsy, as well as their families.
With the right support, the limbo phase can feel more manageable. You can take things one step at a time and ask questions whenever you need to.
