Ivy Samuel
Two years ago, inspired by a TikTok video, Olivia created an Instagram account to talk about living with migraine. Since then, she’s found hope and acceptance of a diagnosis that she previously felt alone in.
Olivia lives with chronic vestibular migraine, which primarily causes dizziness and vertigo. Now, she shares her experiences and posts motivational messages for others to see online. Olivia regularly updates her followers on new symptoms, treatments, and her progress.
By starting her account, she joined a community with others who have similar stories to her own.
More than just a headache
Migraine is a long-term health condition that affects over one billion people across the world. Around 75 per cent of people who live with migraine experience an ‘attack’ at least once a month. These can last anywhere between four hours to three days.
Symptoms can include head pain, nausea, sensitivity to light and/or sound, vomiting, blurred vision, and fatigue.
“…struggling to manage symptoms and avoid triggers meant I had to leave school”
Attack days are very difficult for people with migraine. They may need to leave events early, cancel plans with friends or family, and take time off of work or school. Many spend hours alone in dark rooms trying to recover from a disabling attack.
https://twitter.com/DehennaDavison/status/1703733129133838727
Despite its prevalence, migraine is continuously trivialised and minimised. This stigma is one reason why 71 per cent of people living with migraine feel the condition has had a negative impact on their mental health.
When migraine becomes chronic
In rare cases, the frequency of migraine attacks increase until it reaches the threshold of chronic migraine. Around 2.5 per cent people with episodic migraine will develop chronic migraine each year.
Since I was around seven years old, I’ve had migraine attacks. But it wasn’t until I was 15 that they became chronic.
As I was preparing for my GCSE exams, the regular attacks left me anxious and sick with worry over when the next one would strike. I just about made it to the end of Year 11. However, struggling to manage symptoms and avoid triggers meant I had to leave school a few months into sixth form.
It was a challenging time.
Nobody can prepare you to watch your old life drift away from you at age sixteen. All of a sudden, I felt out of step. And, thanks to social media, I was all too aware that my peers were progressing and enjoying their lives without me.
It was during this period of grief that I found the online migraine community.
Finding an online community
If you search for “migraine” on Instagram, TikTok, or any other social media, you’ll find people sharing their life stories. Some have thousands of followers, brand deals, and paid partnerships. Others have a much smaller presence.
Those who stick around in the online migraine community can build connections with others who truly understand what they are going through, find comfort in the knowledge they are not alone, and simultaneously raise awareness.
Megan started her Instagram account after daily migraine attacks led to an unfair dismissal from her job. She wants to reduce the stigma she knows all too well. For the past two years, she has shared relatable posts about the reality of living with migraine.
Like many people, Megan originally joined to aid others in their struggle. But she has found being part of the online community to be an incredibly valuable experience. Being surrounded by people who get it has brought her a sense of peace and belonging. It has also led to a better understanding of her illness. And, when she eventually saw improvements in her condition, the migraine community was there to cheer her on.
Living with chronic migraine
There’s a lot I can identify with in the stories of both Megan and Olivia.
While adjusting to what my new life looked like at home, I created my own secret online account. I shared my highs and my lows. I spoke about treatments I tried and my frustrations with doctors. And, most importantly, I spoke with people who understood what I was going through.
Despite multiple lockdowns, it’s still an uncommon and solitary experience to spend an extended period of time at home battling a chronic illness.
“Today, despite my chronic migraine, I can live a life that didn’t seem possible five years ago.”
Most people assume the symptoms are the most difficult part. But, personally, I’d say the hardest part of the ordeal was losing the real-life community I had at school. No matter how hard I tried to express how I was feeling, people didn’t really understand. They just felt sorry for me.
Being part of the online migraine community changed my perspective of migraine. I believe it was a catalyst for my progression in the right direction, and it helped me get to where I am today — seeing others learn to live their lives with migraine, before eventually making partial or complete recoveries, gave me a sense of hope that literally carried me forward.
I still struggle with migraine and I’m waiting to try out new treatments. But it’s thanks to the online community that I’m now living a life that didn’t seem possible five years ago.
READ MORE:
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LIVING WITH A CHRONIC ILLNESS AS A YOUNG ADULT
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HEY HUN! HOW MLMS INVEST IN THE VULNERABLE
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CHRONIC PAIN IN YOUNG PEOPLE: ADDRESSING THE STIGMA
Featured image courtesy of Mehrpouya H on Unsplash. No changes were made to this image. Image license can be found here.
