‘Tell Us How You Feel’ Survey Results

By 9 March 2022October 5th, 2022MAI News, Patient Stories, Support

Over 200 people living with migraine took part in our ‘Tell Us How You Feel’ Survey recently and we thank you for your participation to allow us to share the staggering results on how migraine makes people feel and the implications it has on migraineurs mental health. We as a nation and globally too can now somewhat resonate with how isolation can make us feel due to COVID-19 lockdowns, restrictions and time lost with loved ones. Therefore, we can imagine how isolating migraine as a condition is. This was the reason behind this survey and our ‘You Are Not Alone’ campaign, to help others understand better what those living with migraine go through, daily, weekly, monthly, yearly and how this affects their quality of life, mental and physical health. The results of the ‘Tell Us How You Feel’ Survey are as follows:

Q1 – How often does migraine affect your mental health?

38% said always

53% said sometimes

Therefore, 91% of participants agreed migraine has a significant impact on their mental health.

Q2 – In what ways does migraine affect your mental health?

Most answered – Most used words like its debilitating, makes me feel useless and unable to do anything, gets me down being in pain, anxious, frustrated, makes me feel lonely, misunderstood, sad, despair, depressed, affects my daily life, financial worries from missing or having to leave work and the list goes on. Many explained how isolating migraine is by having to cancel important life events, being alone and misunderstood or having to sit in darkness for days until migraine passes.

Q3 – How often does migraine make you feel misunderstood?

44% said always

47% said sometimes

Again a total of 91% of participants agreed to feeling misunderstood when it comes to migraine as a condition.

Q4 – In what ways does migraine make you feel misunderstood?

Most answered – Most used words like I am told ‘its just a headache’, they don’t understand the impact it has on my daily life, people think its not real, people think I am exaggerating, no external signs so people are not aware when I am having a challenging day, think I am anti-social, lazy, unreliable, flakey, being dramatic, say ‘oh you are sick again’,  or just take a tablet and you’ll be grand. Again, the list goes one. Many are made feel bad for not being 100%, for being sick, for not being able to explain exactly how migraine makes them feel and feel like they let their friends and family down when they have to say no to spending time, rest or going to events. One participant said “People think it’s a headache. Take a pill and it will go away. Once told don’t get a migraine at a family funeral, as if i have control over them.”

Q5 – How often does migraine make you feel lonely?

22% said always

50% said sometimes

Total of 72% of participants agreed to feeling lonely because of having migraine.

Q6 – In what ways does migraine make you feel lonely?

“I look fine, so how could I be sick.”

“Isolation and misunderstanding.”

“You sit in a room, on your own, in the dark, hoping for no noise but also hoping that someone checks to see your okay.”

“What I eat can impact migraine, and if the whole family eat the same food, they don’t understand why I’m impacted.”

“I feel not everyone understands how miserable it makes you feel. It can be hard to make some people understand the effects it has on your body and mind.”

“You have to be alone because even the breathing or scent of others can be painful but it is lonely because you see how annoyed they are that plans have changed again or that they have to be quiet again or not spray perfume/deodorant etc.”

Migraine is an invisible complex neurological condition. There are many types of migraine and only some that you can physically see the effects of e.g someone falling over from migraine. This is why it is so important to learn how your loved one is being affected by migraine to make them feel less alone, depressed and anxious. Be compassionate, ask questions, believe what they tell you and be there for them and you will open your eyes to a complexity of migraine as a condition. It’s not just a headache!

Please share this post to educate others and loved ones to help them understand how migraine makes those living with it truly feel. Use #YANA for social media as this is the hashtag for our YOU ARE NOT ALONE campaign which aims to make migraineurs feel less alone and educate others to understand migraine better.