The agony of constant migraines is punishment enough. People like me shouldn't have to cope with social stigma too

Millions of migraineurs are searching for the holy grail treatment that will release them from the daily dread of an attack. This Migraine Awareness Week, let’s give them the support they deserve

Deborah Sloan
Sunday 02 September 2018 14:27
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Many sufferers hide their condition for fear of being thought of as 'weak' or 'flaky', or even of losing their jobs
Many sufferers hide their condition for fear of being thought of as 'weak' or 'flaky', or even of losing their jobs

The fact that today is the beginning of Migraine Awareness Week is likely to fall beneath many people’s radar. Which is a surprise, because with an estimated one in seven people globally living with migraine, the condition touches many lives.

For those who don’t have migraine, it can be almost impossible to comprehend the impact of this misunderstood and oft-trivialised disease. After all, it’s just a headache, isn’t it? Well, no it isn’t.

Migraine is now recognised as a genetically inherited disorder of the brain that produces several neurological symptoms of which moderate to severe head pain is just one. An attack can bring, among other symptoms, visual disturbances, vomiting, dizziness and vertigo, and can literally disable a sufferer for between 3 and 72 hours.

When the pain is severe, sufferers can be driven to beating their head with their fists, or against a wall. On one migraine blog a migraineur revealed that she’d "rather go through hours of natural childbirth than to have to deal with migraine pain for even one hour”.

Two or three migraine episodes a month can play havoc on family, social and professional life. In fact, the World Health Organisation classifies chronic migraine as more disabling than blindness, paraplegia, angina or rheumatoid arthritis.

The “just a headache” refrain, therefore, is not just plain wrong; it also serves to fuel the stigma that many migraine sufferers live with every day – a stigma that often forces them to try to hide their condition for fear of being thought of as “weak” or “flaky”, or even of losing their jobs. As one of the UK’s estimated six million migraine sufferers, I know firsthand how this feels .My migraines have cost me a much-loved career and my livelihood.

There have been times when, in order to just keep working, I’ve over-used medication and ended up with another chronic condition associated with migraine: medication over-use headaches.

Scheduling work and social engagements is a nightmare. Even the gold standard of migraine medication can merely push an attack into the next day, or day after, and I’m left agonizing over whether to sacrifice work for family life or vice versa. Recently, after a particularly severe attack that landed me in hospital, I realised I could endure no longer and took the heartbreaking decision to retire early from my career.

In addition to the personal pain and individual cost for migraine sufferers, it’s estimated that in the UK, 25 million work or school days are lost to migraine each year. You’d think that a health condition that inflicts such pain and produces such a high level of social and economic burden would attract a generous amount of research funding. Not so.

As Peter Goadsby , a neurologist and professor at King’s College London told me: “Migraine is the most disabling worldwide of any brain disorder. It is second amongst all medical problems to back pain in causing lost years to disability worldwide, yet remains, by any measurement, the least research-funded of all medical diseases.”

The good news is that promising treatments have been developed recently that are currently awaiting approval for use in the UK. But it’s hard to believe that in the 21st century there is still no cure for migraine. Some migraine sufferers do eventually find their answer (or partial answer) either through medication or lifestyle changes. But there are literally millions of migraineurs, like me, who have tried everything from anti-depressants to cider vinegar, from beta-blockers to meditation, and who are still searching for that holy grail of treatment that will release them from the daily dread of an attack.

Until a universally effective treatment or a complete cure for migraine is found, eliminating the stigma and reducing the stress of migraine disease would really help ease the burden for migraineurs. All it would take to achieve this is for family members, friends and employers to ask, “What can I do to help you live with your migraines?” Understanding a migraine sufferer’s last-minute cancellation or researching what accommodations in the workplace would help an employee with migraine may not kill the physical pain, but it would go a long way towards reducing the stigma and psychological distress inflicted by this beast of a disease.

Deborah Sloan is a former counsellor who now writes for a living. She writes a blog about living with involuntary childlessness at Without Issue

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