Milly's story

Milly, 21, was diagnosed with epilepsy two years ago, and earlier this year decided to travel Australia and Southeast Asia. Getting diagnosed at 18, right at the end of what she described as the best year of her life, Milly felt like her independence and freedom was taken overnight and it was something she struggled to adjust to.

She said: “I was diagnosed very suddenly at 18 after having a seizure while driving. I have Juvenile Myclonic Epilepsy which meant I was having seizures for years, but no one knew as I was either alone or asleep. I had a lot of trouble finding the right medication; the side effects of each didn’t hit me lightly and the first two we tried caused me to have seizures and it felt like I completely changed as a person. My mental health hit rock bottom, I hated that my life wasn’t the same and thought it would never go back to how it was. Since being on my third medication I haven’t had a seizure in 18 months and feel no side effects, I can’t explain how happy I am we’ve got to this point.” 

Being in a really dark place mentally, Milly decided to document her journey by making TikTok videos to see if she could relate to anyone going through a similar experience. Many of her videos went viral, gaining over 340,000 views on her first initial video about her journey, and she is continuing to use her social media platform to document her epilepsy so she can spread more awareness of living with epilepsy.  Milly has found her TikTok experience to be really positive; “I love the community I’ve found on TikTok! Overall, it has been amazing talking to people going through the same thing and giving support/advice. I really needed that comfort when I was first diagnosed and couldn’t find it. I love being that person for people - I feel like an older sister in a way as I have a lot of young girls coming to me for advice.” 

Milly is a passionate advocate for epilepsy awareness, and she’s hoping to connect with more people through her travels. She said: “Something I’m really passionate about is educating people away from the stereotype that the only symptom of epilepsy is flashing lights.” 

Milly has travelled around Australia, New Zealand, Thailand and Bali and plans on doing much more. It was a big decision for her to decide to travel: somethings she never believed she’d be able to do because of her epilepsy. Milly didn’t think it would be possible to go travelling, something she’d always wanted to do, but once her seizures were managed by medication and the side effects completely wore off, she said: “I suddenly had the realisation that I needed to go travelling to get that freedom and independence back. I’ve been able to get my medication in advance using an online pharmacy service, and my neurologist was happy to prescribe it even though it is for a longer than usual holiday period.”  

Milly initially planned to travel to Australia, since she’d visited before and loved it there. She then booked New Zealand, Thailand and Bali. She explained: “I couldn’t stop booking more places! I think it’s because I realised whilst being in Australia that I am capable of doing more than I thought I could with my epilepsy, so I want to make sure I do it all!” 

Milly travelled to Australia with a friend, and since Bali she has been a solo traveller  occasionally joining  travelgroups. She has a letter from her neurologist and other documentation which she shows to travel group leaders so they are aware that she has epilepsy and is fit to travel. We asked her if she found it difficult to tell new people that she has epilepsy and she said: “Once I started meeting people and making friends it would come up naturally. I love telling people my story and educating them on what epilepsy actually is because 90% of them say, ‘Is that the flashing lights’!” 

We know that not everyone can travel, but we asked Milly what advice she has for anyone considering going on an extended trip once they have approval from their GP or consultant. She said: “Listen to your body; if you feel like you can do it, do it!! It’s so easy to talk yourself out of it because unfortunately there are a lot of ‘what ifs’, but no one knows your body better than you, and if it’s something in your heart that you really want to do then don’t let your epilepsy limit you. There is so much to see and experience; if you have the chance, don’t miss it.  

Epilepsy is more than just flashing lights. I want to help erase the stereotypes; there is so much more to epilepsy and everyone’s journey is so different. I want to be able to give advice and comfort to anyone going through the same. I needed that so badly when I was first diagnosed but couldn’t find anyone that related. I want to prove that epilepsy doesn’t have to control your life and that you can still find freedom and independence. It can just be harder for different people with different types of epilepsy.  

My epilepsy is the reason why I decided to do it because I realised life is way too short!” 

You can follow Milly on her travels on her TikTok: _millyrobinson