Women’s experience of migraine

By: Rachel Baxter, Communications Officer, The Migraine Trust

3rd May 2022

Almost a quarter of women in the UK live with migraine, a painful neurological condition. Many men have migraine as well, but the condition is about two to three times more common in women as hormonal changes can be a trigger.

Like many conditions that affect women and are linked to the menstrual cycle, migraine is often overlooked and not taken as seriously as it should be. Migraine is so much more than the headache many people believe it to be – symptoms range from vomiting and dizziness to muscle weakness and visual disturbances – and it can have a huge impact on a person’s life. We recently shared a survey to find out more about how migraine affects women through the course of their lives, and here are the results.

Over 700 women responded and shared their experience of living with migraine.

Living with migraine

Many people develop migraine in their teens and 29 percent of respondents to our survey said their migraine began when they were 12 to 17 years old. Meanwhile, 18 percent said they developed migraine under the age of 11. This highlights the long-term nature of migraine, as so many people have to manage it from a very young age.

Many women also noted that their migraine has worsened over time; 34 percent said their symptoms have worsened and remained worse, while 35 percent said their attacks have become more frequent. Still, 7 percent said their symptoms have improved, while 12 percent said their symptoms initially worsened and then improved.

The most common symptoms women said they experience with their migraine attacks were headache (96%), tiredness (89%) and increased sensitivity to light (87%). Other commonly reported symptoms included nausea, visual or sensory disturbances, dizziness, and speech and hearing changes.

The impact of migraine

We know that migraine can impact all aspects of a person’s life, and this is highlighted by the survey results.

  • 88% of women said migraine has impacted their social life
  • 86% said it has impacted their work life, while 36% said they have felt discriminated against at work due to their migraine
  • 80% said it has impacted their general health
  • 76% said it has impacted their family life
  • 52% said it has impacted their relationships
  • 80% said it has affected their ability to exercise

Additional comments also noted impacts on holidays, driving, family occasions and the ability to go to school.

“I’m a teacher, and the general attitude is that we should just soldier on through illness – it took for me to have a hemiplegic attack at work for my migraines to be taken seriously,” said one respondent.

“I lost my job as I was told I was taking too much time off due to migraines,” said another.

When asked whether migraine has ever affected their mental health, 65% of women who responded to our survey said yes.

  • 76% said migraine has made them feel anxious or worried
  • 63% said it has made them feel depressed
  • 58% said it has made them feel like they’re a burden
  • 53% said it has made them feel unable to cope
  • 53% said it has made them feel isolated or lonely
  • 38% said it has made them feel fearful
  • 17% said it has made them feel suicidal

“The constant threat of migraine can be very demoralising,” said one respondent.

“Feeling like I’m letting everyone down when I cancel anything,” added another.

If you’ve felt any of these feelings in relation to your migraine, you are not alone. You can reach out to us for support via our free helpline (10am-2pm, Monday to Friday) on 0808 802 0066 or via our online form. If you’re struggling with your mental health or feel suicidal, you can also talk to the Samaritans on 116 123 any time, day or night.

The impact of migraine on big life decisions

People who have migraine live with the condition constantly, and often find they have to manage their lifestyle to reduce the risk of migraine attacks. Of women who completed our survey:

  • 40% said their migraine has influenced their decision to limit the environments they work in
  • 31% said it has influenced their decision to limit the type of work they do
  • 29% said it has influenced their decision to work part-time
  • 22% said it has influenced their decision to not seek a promotion at work
  • 17% said it has influenced their decision to not work

“Other people don’t understand the effect and impact that migraine has on our lives. Some casually assume that they can explain away their own headaches by saying they are migraines,” said one respondent.

Some women also said their migraine has influenced their decisions around having children. Nine percent said their migraine has influenced their decision to not have children, 7 percent said it has influenced their decision to have fewer children, and 5 percent said it has influenced their decision to get help with childcare.

What’s more, 10 percent of women said their migraine has affected how they’ve managed pregnancy, 36 percent said it has influenced how they’ve managed contraception, and 26 percent said it’s influenced how they’ve managed the menopause. Sixty-three percent said migraine has influenced how they manage their overall health.

We’d like to say a huge thank you to everyone who completed our survey. It is clear that migraine is having a huge impact on the lives of many women in the UK and that help and understanding is lacking. You told us what we can do to better help you manage your migraine, from adding more information to our website to expanding our helpline service, and we will take your comments on board. Your answers will also be used to help raise awareness about migraine in society.

If you need support or information about migraine, you can contact our free helpline on 0808 802 0066 or via our online form here.

Read about Zoe’s experience of working with chronic migraine here. Learn more about migraine and women’s health, and how to manage it here.