“What I get from streaming is social interaction and fun which I could not get in any other part of my life”

Amelia's story of finding a supportive community online

27th October 2023

‘I had convinced myself it couldn’t be migraine: it had to be something else like a stroke’

I had my first migraine when I was 20. Both my mum and my sister had them too so I recognised what was happening quite quickly. I took a day off work to recover, felt better by the next day and thought nothing else of it.

Over the next few months, I started having more migraine attacks. I also experienced persistent symptoms such as memory loss, my face slumping and losing the ability to form words. They were so severe at times that I convinced myself they couldn’t possibly be migraines, and it had to be something else like a stroke due to symptoms such as slumping of the face and losing the ability to form words.

I eventually took myself to the doctor, after around a year of struggling. I still didn’t think it would be migraine, and instead listed all the symptoms looking for other answers.  I kept a migraine journal for 3 months which helped show I was having migraine symptoms on an average of 25 days a month leading to a diagnosis of chronic migraine.

‘I was so defeated’

Over the next four years I tried a variety of pills to try and get my migraine under control. The side effects from the medications were also kicking my ass day in and day out! The entire experience involved lengthy waiting lists, difficulty accessing treatments and frustrating periods of trial and error, trying to find what worked for me. At one point, a mix up at the hospital meant the treatment I’d waited 18 months for wasn’t available. I was so defeated.

‘My happiest times have actually been while I’ve been working – my ultimate goal would be to return to the workforce’

As my migraine symptoms continued, I found I could no longer do my more physical retail job and moved to a call centre, but I also had to leave that due to the amount of sickness leave I had to take. At one stage, when my preventive medication was working a little, I was able to re-enter part time work but unfortunately once I had to come off that medication, I was back to being housebound for large stretches of time, unable to work.

It was actually one of my previous managers who introduced me to The Migraine Trust. My manager and another colleague also experienced migraine, and we all went to one of The Migraine Trust’s Managing Your Migraine events together, which was great. Unfortunately, even with supportive colleagues, the challenges of continuing in employment were huge and I made the decision to leave.

I would say that my happiest times have actually been while I’ve been working. My ultimate goal would be to get back to a place where I’m able to return to the workforce.

Schedules are out the window for me but despite all the barriers and challenges, I’m not completely useless or unable to do things. I make the most of the windows between migraines. Most of my friends work and it is difficult to schedule stuff in advance for me, but I have found a lot of joy chatting and calling people from my house when I’m well. I am a very chatty person!

Finding my community on Twitch

A few years ago, a friend suggested I use my “chattiness” and try livestreaming online as a way to connect with people. Since I can’t leave the house as much as I would like, and I don’t work, I often find myself quite lonely and isolated. It was an interesting suggestion, so I gave it a go and it changed my life.

What I get from streaming is social interaction and fun which I could not get in any other part of my life. Every day I can, I jump on live for a few hours and chat to people. I sew and crochet and embroider while chatting, and it’s led me to meet lots of people with similar interests. Also, surprisingly, a lot of those people were in exactly the same position as me! There’s a big community of people with migraine and other hidden disabilities on Twitch, which has been amazing. Many of us on the platform are stuck at home due to some kind of illness, but we all find peace and happiness meeting up online for a few hours. It’s a place where people understand the fluctuating nature of my condition and it’s been a really welcoming space. Listening to others sharing their experiences has helped me feel less alone.

As well as finding a great community, I’ve even done some fundraising streams through Twitch, including for The Migraine Trust – it’s great to be able to do something I enjoy for a good cause, I’d really recommend giving it a go!

Livestreaming is a great way to raise money for The Migraine Trust to help us to improve the lives of anyone living with migraine. If you’d like to give it a go, find out more and sign up to stream for Team Migraine!