The festive season can be an exciting and special time for spending time with loved ones, eating festive foods and celebrating. However, for people living with TSC, this busy time can be stressful or overwhelming due to both the physical and mental aspects of TSC including epilepsy, autism, and anxiety.

To help make the festive season as enjoyable as possible, we’ve developed a quick checklist of things that you and loved ones can do so that everyone can navigate and make the most of the festive season when affected by TSC.

Plan and prepare for the festive period

Planning ahead and sharing plans with your loved ones for the day itself can give everyone time to mentally prepare and adjust to festive plans ahead of time. Talking about the festive seasons can be helpful, as can looking at photos and videos of previous festive times. Be prepared by writing lists and managing expectations, helping to avoid potential stress triggers for anxiety or seizures.

Look after yourself

Whether you have TSC yourself, or are a loved one or carer of someone who does, it’s important to look after yourself during the busy festive season. Make sure you’re eating regular meals, drinking enough water, and getting enough sleep. Sleep problems are common in TSC, and a change in routine with time off school or work can further disrupt sleep.

Try to get outside during the day to keep your body clock in sync, give yourself time to wind-down in the evening and avoid screens before bed. Planning time for regular rest can also give you and your loved ones time to recover between plans. If you get invited to things over the festive period, don’t feel like you have to say yes to everything – be selective and only do what you feel will be manageable and enjoyable. Resting and recuperating is the best way to stay well and avoid feeling burnt out or overwhelmed. Check out our previous virtual events for further sleep and wellbeing strategies.

Create routines (when possible)

It can be hard to stick to routines over the festive period but trying to stick to some aspects of your usual routine could help, even if that is getting dressed and eating breakfast at the same time. Creating yearly festive traditions that you all look forward to can also help to establish a ‘festive routine’ that works for you and your family, rather than spontaneous and different plans, as this might cause anxiety. If you take regular prescribed medications and are a bit out of your usual routine, you might want to set an alarm on your phone to remind you to take medicine at specific times.

Be conscious of potential sensory overload

People with TSC can have different sensory needs, which can make the decorations, lights and wrapping of the festive season very welcome, extremely overwhelming or anything in-between. Getting the whole family involved in deciding on the decorations for the home, including colours, the kind of decorations and where to have them can be helpful.

It might be more manageable to decorate sparingly, avoid scented items, and use gift bags instead of wrapping paper. Leave some areas of the home decoration free and quiet, so that you or a loved one can retreat when in need of some downtime. If visiting family or friends, you could ask them if they can keep a room or space free also, or ideally what decorations and gifts they might want to avoid.

Make sure your medicines are stocked up

Opening hours at shops, pharmacies and doctors often change during the festive period. Make sure you order your prescribed medication and stock up in advance. If you’re away from home visiting friends and family and need to find a pharmacy, you can find your nearest one and its opening hours online by clicking on the following for England, Scotland, Wales and Northern Ireland.

Be open and honest with your loved ones

Talking to your loved ones about how you’re feeling, and what can help everyone to have a restorative festive season can make a big difference. If you’re experiencing heightened TSC symptoms such as anxiety and depressed mood or worrying about having a seizure, talking to your loved ones can help you to feel supported. Let them know if there is anything they can do to help you or a loved one with TSC to feel more comfortable and enjoy the festive season. Most people are very open to reasonable adjustments, and your loved ones undoubtedly want you to also enjoy the festive season!

Talk to others, or ask for support

It’s ok to talk. As well as going through things with your loved ones, you can speak to a healthcare professional, or the TSA. The TSA Support Line is here to provide support or a listening ear to anyone affected by TSC – we’re here until the end of 22 December 2023. You may also find it helpful to connect with the TSC community through our social media pages or at our upcoming virtual events. If you urgently need to talk to someone before we reopen, you can call the Samaritans on 116 123.

Remember that the festive season isn’t for everyone

The festive season looks different for everyone, and it is ok if you’re not feeling the festive cheer. The important thing is that you don’t force cheer on others or yourself.

TSC can present additional challenges, but hopefully these tips can help you and your loved ones to get through the festive season, whether this means a time full of joy and delight, or a time where everyone feels comfortable.