I’ve been thinking a lot about why stigma is so insidious and what we can do about it. A big part of the problem is in the way that everyone talks about Migraine. The way we talk about Migraine influences how we and others view the disease and we’ve been doing it incorrectly.
We talk about Migraine as if it is something that comes and goes, like a headache. We’re all guilty of saying things like…
“I’m getting a migraine.”
“The migraine is over now.”
“My migraines last for days.”
“Bright lights trigger my migraines.”
“How can I stop a migraine?”
“I’m getting too many migraines.”
These statements leave the impression that Migraine is periodic problem. People assume that when we are “migraine-free” we are as healthy as anyone else. Yet we all know this isn’t true. Migraine is a genetic neurobiological disorder with no cure. It never goes away. Yet we talk about it like it has a beginning and an end. There may be a lucky few who are able to achieve remission by controlling trigger exposure or through preventive medication. Yet the fact remains that Migraine is always present. To refer to the episodes of pain, light and sound sensitivity, nausea, and cognitive problems as “a migraine” simply isn’t correct. There is no such thing as “a migraine”. Patients with Migraine disease experience episodes during which they experience the four phases of an acute attack.
Let’s look at this idea another way. We wouldn’t say someone with diabetes is “having a diabetes” when their blood glucose is too high. And we’d never refer to a seizure as “an epilepsy”. We’d say, “That person has epilepsy so they will have seizures sometimes.” Someone with cardiovascular disease can have a “heart attack” but we don’t call it “a cardiovascular”. By calling our periodic attacks “a migraine” we perpetuate the stigma that harms us all. Our disease will never be taken seriously if we can’t even describe it accurately.
This is an example of how I explain Migraine to people:
“I have Migraine disease. That means that periodically I experience episodes called ‘migraine attacks’ (or ‘attacks’ for short). During these attacks, I have trouble tolerating sensory input because all my senses are heightened to the point that touch, sound, light, and smells are painful. I have difficulty comprehending and communicating. My speech may be garbled or I might forget common words. My reflexes slow down, so it is not safe for me to drive or operate heavy machinery. Sometimes I get blind spots, blurred vision, flashing lights, or zig-zag lines in my vision that are called auras. I also experience excruciating headache pain on one side of my head. Any movement makes it worse. Sometimes I get dizzy, feel nauseous, and even vomit. All of these symptoms are part of the “attack”. Attacks come and go. I have medicine that limits their frequency and other medicine that helps to shorten the attack. They can be as brief as 4 hours or go on for days. Because I have this genetic disease, I must be careful to avoid the things that set off attacks. These are called ‘triggers.’ Triggers can be almost anything from a change in weather, to bright or flashing lights, loud noises, strong smells, and often ingredients in food or drink. When I make a request of you, I’m not trying to be a ‘party pooper’. I really do need to avoid trigger exposure if I am going to feel well enough to join in the fun.”
When I started explaining Migraine in this way, I discovered that people took me a lot more seriously. They understood and accepted that this type of condition could easily disable someone to the point they could not work. The way we speak about Migraine does affect how we and other migraineurs are treated.
So let’s review…
- Migraine is the genetic neurological disease that makes a patient prone to episodes or attacks.
- Attacks include the four phases we experience: prodrome, aura, headache, and postdrome.
- Triggers are the things in our environment that can set off an attack.
We need to adjust our vocabulary so that others will better understand and empathize with us.
|Instead of saying…||Try saying…|
|“I’m getting a migraine.”||“A migraine attack is starting.”|
|“The migraine is going away.”||“The attack is almost over.”|
|“______(trigger) gives me migraines.”||“_______(trigger) will set off an attack.”|
It is going to take a lot of time for all of us (including our doctors) to change the way we talk about Migraine and its episodic attacks. It will feel awkward for a time. But it is essential that we change our terminology so that the general public has a better understanding of what it means to have Migraine disease. By changing the way we talk about Migraine, people will learn:
- Migraine is a disease that is lifelong and incurable. Remission is possible for a limited few, but many people never recover. There is a subset of patients who experience attacks every single day for years without relief.
- It is characterized by periodic episodes of moderate-to-severe one-sided headache accompanied by hypersensitivity to light, sound, smell, and touch.
- It can also include nausea, vomiting, dizziness, vertigo, garbled speech, an inability to communicate verbally, and one-side reversible paralysis.
- Patients experiencing an attack have slower reflexes and difficulty with cognitive functioning. They should not drive or operate heavy machinery during an attack. Nor should they be expected to perform tasks that require concentration, focus, communication, or critical thinking.
- Just before, during, and after an attack, patients may experience mood swings, cry easily, or become irritable. This is because brain chemistry is seriously altered at the start of every attack. It can take hours or days for the brain to normalize again.
- Patients with Migraine disease are at greater risk of developing cardiovascular disease. If they have Migraine with aura, they are at increased risk of stroke. Women who continue to experience attacks after menopause have double the risk of developing Parkinsons.
- Patients with Migraine often experience comorbid conditions (occur at the same time) such as Depression, Anxiety, Sleep Apnea, Fibromyalgia, and many more.
- Intelligent, average people have Migraine disease. It is not a mental illness or moral failure. It is not caused by lifestyle choices. Patients with Migraine disease are born with it. They didn’t choose to have this disease and would get rid of it if they could. Many must take dozens of different medications in order to manage this disease. Rarely are the medicines they take addicting. However, they do have side effects such as weight gain, cognitive slowing, digestive problems, etc.