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shruti’s story: living with migraine
diagnosed around age 12, shruti shivaramakrishnan says she can't remember life without pain.
may 2 2022
4 minute read
shruti shivaramakrishnan's healing journey has included yoga, meditation, walking, eating healthy, and taking vitamins. supplied
i don’t remember life without pain, or migraine . i was 12 or 13 when i was first diagnosed. it was after years of trying to articulate the pain. i’d say my head hurts, and the next hour i’d say my tummy hurt and so many other confusing symptoms. it’s not surprising that my family — and even my doctors — assumed i was just trying to get out of school. my mother took me to so many places trying to find a diagnosis and a solution. finally, we met a neurologist who gave us an answer — chronic migraine stemming from chronic stress, anxiety and depression.
even as i started taking prophylactics, i had light and sound sensitivity, as well as mood swings. everything around me was a trigger. standing outside under the hot sun during gym class or band practice was the worst. i’d always black out and wake up with a throbbing headache that lasted days. i’m 31 now, and i’ve probably had less than 100 migraine-free days all my life. there is an ever-growing list of triggers and symptoms that are still difficult to explain.
it’s lonely being a child with migraine
it is lonely, being a child with migraine. i couldn’t be like the other kids. i hated playing outside, or running or anything that involved being loud or sweaty. everyone assumed i was lazy, weird, arrogant, and antisocial. eventually, i began to believe it. i went from being a star student who was into so many cultural and literary clubs, to someone struggling to make it through the school year. i had big dreams but my body and my brain were not accommodating. i could feel my self-confidence, self-esteem and all things ‘self,’ just ebbing away. it’s a miracle that i found a way to have a career.
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i studied biotechnology but i switched to being a content writer. i worked with several startups across india. i was really good at my job and as a result, i was often overworked. it exacerbated my migraine condition so much that i’d have to to quit around the seven-month-mark to rest and recuperate. i always started over from scratch. finally in 2016, i found a company that offered flexible work hours and an option to work from home. i was thriving under an excellent manager who was both empathetic and encouraging. i quickly rose from my position as a writer to the head of a content marketing team. slowly i began to notice brain fog, issues with memory and concentration. around this time, my daughter was one-year-old, and we were preparing to move to canada.
it didn’t help when my doctor said it was stress
when we landed in toronto, it felt like years of denying migraine its true place in my life began to catch up with me. the weather, pandemic, lack of a social circle and guilt for not being able to keep up with an energetic toddler triggered an intractable migraine attack that lasted months. i had stopped taking prophylactics before my pregnancy and was depending only on tylenol. it didn’t help when my gp said, “i don’t think it is migraine, maybe you are just stressed.”
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i had to advocate for myself week after week (with increasing anxiety), insisting to be referred to a specialist. when i was finally referred, there was a year’s wait time, which was again rescheduled due to covid. i don’t know how i made it through 2020 without real medication or a treatment plan. finally at the beginning of this year, i was prescribed aimovig. when my neurologist took the time to explain my mri and the symptoms i was feeling, it gave me peaceand helped me understand why i am the way i am.
chronic migraine has impacted every relationship in my life. it has been difficult for people around me to understand my irritability, fatigue, and sensitivity. i believed them when they said i was being difficult or lazy. they have never experienced this before, so they couldn’t have understood. now, after having found online support groups in canada and a supportive instagram community, i finally don’t feel alone in my struggle against migraine.
there’s a lot of advocacy that needs to be done. medicine doesn’t understand migraine. how can regular people grasp how it destroys us? you can find a cure only when you understand the cause or a mechanism of a disease. considering that migraine impacts at least three people in a room of 10, it should be taken more seriously. there should be more funds allocated for research. also, i should not have to beg my gp to believe me or wait for more than a year to see a specialist. there should be integrated cross-functional headache clinics across the country, and mental health care for patients with chronic migraine should also be covered under ohip. this disease should not drive a person into depression from mere helplessness.
i still have more bad days than good days
i have more bad days than good days. sometimes it’s so hard to get out of bed. i realized that i just need to find a way to manage my symptoms until the health-care industry and the government catches up. i have a routine and a proper sleep schedule. every day i practice yoga , meditate, walk, eat healthy, take vitamins, hydrate, read and write, rediscover things i love, and spend time with my family. advocating on instagram has also been integral to my healing journey. i post on the reality of migraine and it has been helping others like me explain their disease better to their loved ones. the dream is to create a migraine-friendly world. (you can find me on instagram.com/chronicallymeh or on my advocacy page www.chronicallymeh.com ).
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honestly, i’m still struggling. i feel like a ghost of the person i used to be. but i’m sure there is at least one person out there who feels the way i do. i hope sharing my story makes you feel less alone.
connect with shruti shivaramakrishnan at www.chronicallymeh.com.
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