The Migraine Dirty Dozen: 12 Things Not to Say to a Chronic Migraineur
Dear family and friends of chronic migraineurs;
I write today to tell you what your loved ones probably will not — a list of the top things the migraineur in your life will have a visceral, negative reaction to when heard coming from someone they care about that I like to call "the dirty dozen":
Number 1
"If you could just lower the stress in your life." Migraine is not caused by stress, and although lowering stress levels is good for anyone, this will not eliminate our attacks which are both genetic and neurologic in nature. Saying this will cause additional stress to us, though, because we have enough to deal with in our lives without feeling guilty and judged by those we care the most about. We need acceptance and knowing that you are there to help us when we need it the most.
What can you say instead? Offer to lighten our stressful load instead of making a comment that is not helpful.
Number 2
"You look fine./You don't look sick." Chronic migraineurs use an enormous amount of energy trying to look as normal as possible, and we want to know that we have been successful. However, this statement sounds condescending and judgmental to the chronically ill — as if we must not have a real disease because you cannot look at us and see the damage it has caused in our lives. We know you don't mean to hurt us, but if you could see the results of our disease on the inside of our bodies and our lives, you would be shocked and take a much less cavalier attitude toward our struggles.
What can you say instead? "I am SO happy to see you today!"
Number 3
"It can't hurt that bad." Migraine, especially chronic migraine, is one of the worst kinds of pain and is often undertreated enough to cause disability to the patient. Add to that nausea, vomiting, and other symptoms we sometimes suffer daily. The symptoms work in concert to create a situation we cannot escape yet become desperate to try. Chronic migraine results in life ending behavior every year, devastating lives across the board.
What can you say instead? Try asking what you can do to make the migraineur feel better.
Number 4
"It's all in your head." Clinical depression and migraine are primary (not caused by anything else) diseases involving neurotransmitters such as serotonin. While it is common for clinical depression and migraine to be comorbid - especially chronic migraine - it is certainly normal for anyone with a chronic disease to become depressed as a result of their experience. It should be expected as a normal result of the patient's illness that can be minimized, treated, and helped with a knowledgeable physician and a good support system. Migraineurs are not crazy, lazy, or seeking attention. They have a disease. While it is usually not yet possible to see changes in labs or imaging in the migraineur to prove their neurological disease exists, other physical signs abound and may include increased heart rate, respiration, and blood pressure, dizziness, weakness, or paralysis, the inability to speak, nausea and vomiting, among other symptoms and signs. Migraine is genetic and cannot be controlled by the migraineur beyond the scope of seeking treatment from a headache specialist and their team, who will try to prescribe medications and treatments which may or may not work for any individual patient.
What can you say instead? Ask what you can do to offer support to the migraineur.
Number 5
"It's a 'woman thing.'" Please, let's not take this back to the dark ages when epilepsy was "demon possession" and "hysterical" women with tight corsets suffering from "the vapors." Men experience migraine. Children experience migraine too. There are physiological differences between males and females of every species, which is good. These differences make life much more interesting. Some of those differences can also trigger migraine in those people with the genetic capacity for the disease. A frequent trigger is reproductive hormone fluctuations. Unfortunately for women, their reproductive hormones are designed to fluctuate, and lucky for men, their hormones are meant to remain more stable. Hormones are only a small part of the migraine picture, though, and only one of the thousands of potential triggers.
What can you say instead? Consider asking the migraineur about their particular triggers.
Number 6
"You can work through it." Chronic migraine is recognized as a disabling, systemic disease by patients who experience them, as well as physicians who treat them and even the government who offers Social Security Disability to those who suffer from it. A migraine attack often is worse than the worst flu a non-migraineur can imagine, yet it is often refractory to the easy-to-find treatments used for a case of the flu. Once the flu goes away, you're done. Migraines come back over and over and over again, sometimes for decades or a lifetime. Chronic migraine is relentless.
What can you say instead? Suggest a shortcut to make their job easier or offer to help them until their medicine begins to work.
Number 7
"Take a pill." Migraine is a genetic neurologic disease spectrum of which pain is only one part. You probably didn't know that a patient can have a migraine without the pain component at all or that migraine attacks can range from relatively mild to life-threatening. You might not realize that most chronic migraineurs take preventive medicine every day. No two patients are alike, and what works for one will not work for another. Many episodic migraineurs can take medication, abort their attack, and continue with their day — most of the time. Some cannot. Chronic migraine often necessitates taking abortive or rescue medicine more days than not, and we are limited because those medicines can cause enormous problems of their own. Additionally, insurance only gives us a few to take each month, and they can cost hundreds of dollars. Some days we have to choose not to treat a particular attack because if we treat that attack, we won't be able to treat another one that might be worse. Frankly, telling someone to take a pill is hurtful to the chronic migraineur. We don't want to be miserable and would take medicine if possible.
What can you say instead? Ask if you can help the migraineur by turning off lights, down audio, or ventilating a smelly room to help with comfort issues.
Number 8
"It's just a headache." Actually, it's not. Migraine is a systemic disease that affects nearly every part of our body, from the digestive to circulatory systems to the endocrine and nervous systems. Chronic pain eventually results in central sensitization and allodynia that causes severe pain throughout our entire bodies. If the disease itself isn't hard enough on the body, the treatments we are forced to take wreak havoc, often causing further damage and disability.
What can you say instead? Ask the migraineur about their symptoms so you can understand their experience and possibly help them with their next attack.
Number 9
"Go get a hobby; it'll take your mind off the pain." If you break your arm, will getting a hobby make your pain go away? Of course, it won't. Yet a migraine makes a broken bone look like fun at the circus. While distraction is a recognized and effective way for patients to better control their pain, this technique requires immense concentration and practice beyond a simple hobby. The worse the pain, the less the chance the distraction will be helpful. In either case, distraction will not prevent an attack, nor will it treat or "cure" migraine. Migraine is a genetic, neurologic disease over which the patient has little to no control.
What can you say instead? Ask the patient if there is anything you can do to help distract them from the symptoms of their attack.
Number 10
"I read about something new that can cure migraine." OR "Have you tried this? It worked for a friend of mine." While migraineurs want to know that our loved ones are thinking about us and want to help us, the chance that you have stumbled upon a miraculous treatment or "cure" that our specialists or we, who have suffered terribly with this disease, have not is minuscule beyond measure. Everyone bombards us with the same information, and we've almost always tried it repeatedly. We are weary of the constant suggestions — not because we don't appreciate that you care, but that it makes us feel even more helpless and reminds us that we have failed yet again where others have found success.
What can you say instead? Please preface it with the statement, "I know you've probably already heard of this, but I wanted to ask just in case…." If you truly want to be helpful, ask us what you can do or what we might need. If you feel compelled to tell us about the latest treatment you read about or heard about, at least.
Number 11
"You just need to get outside for fresh air and exercise more." While exercise is sometimes helpful for migraineurs when they are not in the midst of an attack, chronic migraine often means back-to-back attacks that leave the patient no time to go outside or exercise. Additionally, exercise is frequently a trigger for migraine attacks, especially in those who are chronic. If we are seeing a specialist, we have most likely also seen a physical therapist who is helping us with needed exercise in ways that will be most effective for our particular situation. Moreover, the sunlight we are exposed to outside may cause physical pain as a part of our attack or act as a potent trigger for another attack. Exercise and the outdoors are things we all miss, but it is a slippery slope we must navigate with care. It will not "cure" our migraine disease.
What can you say instead? The next time you see us having a good day, offer to take us to the park or walk with us.
Number 12
"At least it's not fatal." Unfortunately, this is not true. Though rare, migraine-related strokes take the lives of patients every year.1,2 Migraine — especially chronic migraine — has been found to be tightly correlated with other serious or even potentially fatal health issues, and often it is the combination that is deadly. Migraineurs without appropriate treatment are those most at risk of stroke, self harm, and death by related causes such as accidents, depression, accidental overdose, side effects, medical mistakes, etc.
What can you say instead? Consider acknowledging the struggle of the migraineur and remind them how much you love and appreciate their presence in your own life.
What has been said to you?
If you are a migraineur, are there things loved ones have said to you that have angered or hurt you? Most of the time, our loved ones say things because they are really trying to help us. They don't understand they are hurting us with their words. Help us help them by adding to this list in the comment section below.
There's more! What did the community say they've heard that have upset them? Read 18 Things Not to Say to a Person with Migraine.
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