Illustrating the reality of migraine: Shruti’s struggle to be taken seriously

_“I loved growing up in Bangalore. It’s such a beautiful, vibrant, modern city with so much going on. Everything you could ever want to experience, you can find it there. The Garden City of India, they call it. The Silicon Valley of India. But it’s not the best place to live with migraine.

I developed the abdominal symptoms of migraine when I was six years old, which over time also impacted my mental health, including anxiety, stress, and depression. I had a very hard time articulating what it felt like to my parents, let alone to doctors. There was no migraine diagnosis. Instead, there was a lot of ‘I think she’s just trying to get out of school.’ There was a lot of ‘it’s all in her head.’

Once the headache symptoms appeared at 13, I did get a diagnosis for my condition. What I didn’t get was a treatment that worked for me. It became impossible to live normally especially in such a bustling city. I couldn’t tolerate the lights, the sounds, the smells. I started having a very hard time around large groups of people. These things would cause me so much stress, and the stress would overflow into a migraine attack at the slightest provocation. I was in pain all the time, living at an eight out of ten every day. It changed who I was, and I didn’t like who it made me.

Migraine is a serious neurological disease that affects an estimated 5 million Canadians. Despite its prevalence, it is not always well understood by health professionals, which can delay diagnosis and leave people with migraine dealing with symptoms and challenges without personalized treatment.

Suspect migraine? Download the guideDownload the guide to help your next conversation with your primary care provider.

Source: Migraine Canada.

DID YOU KNOW?

Today, decades later, I look back and I can see how my life started to get away from me the moment the headache symptoms appeared. People with migraine fight so hard not to be left behind. We chase the life we expected, running faster and faster, and putting ourselves last with every step. We just end up burnt out and broken down, and we still never catch up. We have to learn to pace ourselves, to stop when our bodies tell us to stop.

After our daughter was born, my husband and I had the opportunity to move to Canada, and there was so much appeal to the idea of living somewhere a little quieter, a little slower-paced. A good education system for our daughter, a good health care system for all of us. We figured we could get used to the cold.

Right around the time we made the move, though, my migraine attacks became much worse. I found myself sitting for 24 hours in the ER, only to be told to go home and take an over-the-counter painkiller. And, when I tried to explain why that wouldn’t work for me, I was dismissed. For me, Canada, it turns out, is also not the best place to live with migraine. Here, as in India, I’ve had a very hard time being taken seriously. And I didn’t have the words or tools to communicate what I needed. I didn’t even know what I should be trying to communicate.

I suffered without help. It was the worst phase of my life. I started having serious issues with concentration and memory, to the point where I couldn’t do my job as a writer. I had to make a conscious decision to abandon my career and stay home with my daughter, but I also felt like a terrible mom. When my daughter would cry, I couldn’t process anything but the sound. I could barely parent her. I could barely brush my own teeth. I moved through each day in a fog of pain, just trying to keep us alive.

Then, thankfully, I found a migraine community. It was life-changing to discover that there were so many people out there who experienced the same symptoms, who faced the same struggles. That community saved me, and it made me want to help other people save themselves. I realized I was far from the only one who’d fallen through the gaps in the system because we didn’t have the language to explain our reality or advocate for ourselves.

And so I started illustrating my migraine experience and posting it on Instagram. The more I shared, the more I felt in control of my own journey. I’d spent so long lost, without a sense of my own identity. Connecting with this community gave me purpose again. It gave me a way to understand myself and heal, to coexist with this disease. And it helped me finally advocate for myself, learn the words I needed to communicate what I was going through, find practitioners who would listen to me, and start trying different treatment options until we found one that actually worked for me. Now my ‘living at an eight every day’ is down to just one or two attacks per month. I can finally separate my idea of the disease from my idea of me.

I want this clarity for everyone who lives with migraine. I know so many people who are uncomfortable in their own bodies because of this disease. People who’ve lived with pain for so long, they try to convince themselves they don’t feel it anymore. People who aren’t able to work, who aren’t able to parent effectively, who live in fear that things will never get better. 

We can’t afford to give up on our health. If you suspect migraine, make a plan of how you’re going to bring it up with your health care provider. You don’t need to have it all figured out, but try to know what questions to ask, and don’t let anyone dismiss you. You will have to advocate for yourself, but you owe it to yourself to persist. Because it can get better.”

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