Letter to people without migraine

Imagine for a moment you’re having a dream.

In this dream you’re trapped in a room with no doors, no window and no light.

It’s pitch black.

But there’s someone else in the room.

Someone who’s wearing night vision goggles whilst you remain in the dark.

What you can’t see is their firm grip on a metal baseball bat, ready to swing.

You’re hit in the head and drop to the floor. The attack causes dizziness, vertigo, and confusion.

Eventually you vomit from the intense pain. Your speech is slurred. You can’t concentrate.

You frantically search around this small dark room, feeling only solid concrete in every direction.

There is no escape.

Some time passes… it could have been hours or even days.

Just as you can begin to rise to your feet, you are struck again in the head.

The attack leaves you completely debilitated. Worse than the first.

The pain is so intense you feel you might pass out… but somehow you don’t. Cruelly, you’re left conscious with all the pain.

Your head is spinning. You feel pins and needs in your fingers and your face.

Migraine Stigma

Bright lights which aren’t really there, blind your vision.

You beg for it to stop.

But it won’t.

***

This is how migraines have been described to others without migraine.

It’s a nightmare that you don’t wake up from.

Only it’s worse.

No one believes you.

This is the reality that people with migraine face

  • Migraines are not headaches, they are a neurological disease diagnosed by an extended set of criteria which include, but are not limited to, nausea, vomiting, sensitivity to light and sensitivity to sound in addition to moderate or severe head pain.[i]
  • Migraine is more common than asthma, epilepsy and diabetes combined.[ii]
  • According to the World Health Organisation, a severe migraine attack is among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis.[iii]
  • Like autism, there is a spectrum of migraine disability. Some people have one attack or less per year. Others can have migraine symptoms every day. It is estimated that 2% of the world’s population have migraine or migraine symptoms on at least 8 days a month.[iv]
  • You can be smart, take your prescribed medication and still fail repeatedly to improve your condition. Research in the US found that around just 1 in 20 patients with chronic migraine are correctly diagnosed and treated by their doctor.[v]
  • Migraines are not a psychological disorder or personality type.
  • The stigma for chronic migraine is greater than that of epilepsy.[vi]
  • The general public understanding of migraine is poor. Migraine Awareness Week in the UK and National Migraine & Headache Awareness Month in the US are not for profit initiatives to improve the awareness, research and advocacy for migraine patients.
  • There is no cure for migraine. There are treatments available but nothing works for everyone. A treatment is considered effective if it can reduce the frequency or severity of migraine by at least 50%.[vii]
  • In rare cases, migraine attacks can be life threatening. Each year people with chronic migraine are lost to suicide. Attacks are also known to induce a stroke in susceptible patients which in rare cases has led to death.[viii]
  • Those with migraine are often discriminated against. Migraine patients can experience social ostracism, isolation and job loss as a result of their migraine condition.[ix]
  • Migraines are complex and multifactorial. Many things can trigger a migraine in different people including:[x]
    • Sleep factors: lack of sleep, poor quality sleep or sleep schedule changes.
    • Strong emotions: such as distress, grief or anxiety.
    • Monthly hormonal fluctuations.
    • Odor: strong smells, incense, cigarette smoke, perfume and chemical smells.
    • Visual stressors: including fluorescent lights, bright sunlight, exposure to bright computer screens for extended periods of time or flashing lights.
    • Neck pain: including discomfort, stiffness or pain in your neck or upper back area and the shoulders.
    • Hunger: including missing meals, low blood sugar levels, hypoglycaemia or getting too hungry.
    • Dietary factors: There are many potential dietary factors. Not all affect everyone. Common foods listed as triggers include nitrites (processed meats) and MSG (monosodium glutamate), chocolate, aged cheese, red wine, beer, citrus fruits, cured meats such as bacon, hot dogs, aspartame and ice cream.

Over time, migraines can take everything.

Many people with migraine need all they have to deal with the physical suffering and mental stress caused from constant and debilitating attacks.

It's when I’m at my weakest and most vulnerable from the attack I’ve just gone through, I’m forced to face another unexpected monster.

Discrimination and ridicule.

I’m told things like: “Why did you leave work? It’s just a bad headache. You don’t see me leaving when I get a headache.”

It’s difficult to describe the frustration and disappointment from such a patronising statement.

If I wasn't so exhausted from my recent attack, I’d be more angry.

Cancer patients who have both migraine and cancer have said that of the two conditions, they found migraine more difficult.

Cancer you can see. It leads to more deaths. Cancer immediately garners the sympathy and support of loved ones.

Migraines on the other hand are met with skepticism, stigma and discrimination.

Migraines don’t kill as many people as cancer but they can destroy everything worth living for.

Migraines have broken up marriages, families, relationships and careers.

If you're reading this letter from someone who shared it with you, it's because I don't want our relationship to fall apart. You’re important to me. I’m sharing this letter with you because I love you.

This isn’t a request for pity or sympathy.

I’m simply asking that you try to understand:

...I’m not trying to get out of the housework.

...I’m not taking the day off work to go shopping.

...I’m not trying to avoid your friends' events.

I’m simply doing the best I can with what I’ve been dealt. There’s always someone worse off than myself and I’m grateful for what health and support I do have.

But I didn’t ask for this.

This is one of the most complex and challenging battles life has thrown me.   

Help make the fight easier by removing the guilt and shame.

When it’s all said and done, few things matter more than our friends and family. What impact do you want to have on others around you?

You’re health too may some day fail.

If it does, you can only hope that you get the support that is being asked of you now. 

With your patience, understanding and support, I might just be able to make it out of that dark room.


Share this letter with those you care about

The more awareness and understanding we have the more we can reduce the unnecessary stigma and discrimination of those with migraine and other debilitating neurological diseases.



SOURCES

[i] Lipton, Richard B., et al. "Migraine prevalence, disease burden, and the need for preventive therapy." Neurology 68.5 (2007): 343-349.
[ii] Headache Disorders – not respected, not resourced. All-Party Parliamentary Group on Primary Headache Disorders. 2010.
[iii] Shapiro RE and Goadsby PJ. The long drought: the dearth of public funding for headache research. Cephalalgia. 2007;27(9):991-4.
[iv] Natoli JL et al. Global prevalence of chronic migraine: a systematic review. Cephalalgia. 2010 May;30(5):599-609.
[v] Lipton, Richard B., et al. "Barriers to the diagnosis and treatment of migraine: effects of sex, income, and headache features." Headache: The Journal of Head and Face Pain 53.1 (2013): 81-92.
[vi] Young, William B., et al. "The stigma of migraine." PloS one 8.1 (2013): e54074.
[vii] Kaniecki R, Lucas S (2004). "Treatment of primary headache: preventive treatment of migraine". Standards of care for headache diagnosis and treatment. Chicago: National Headache Foundation. pp. 40–52.
[viii] Agostoni, E., et al. "Migraine and stroke." Neurological Sciences 25.3 (2004): s123-s125.
[ix] Diamond, Merle. "The impact of migraine on the health and well-being of women." Journal of Women's Health 16.9 (2007): 1269-1280.
[x] Pavlovic, JM; Buse, DC; Sollars, CM; Haut, S; Lipton, RB (2014). "Trigger factors and premonitory features of migraine attacks: summary of studies.". Headache. 54 (10): 1670–9.