Feeling Helpless? How to Help the Migraine Sufferers in Your Life
I’ve seen a lot of articles and forum posts from people asking how they can cope with having a spouse, family member or close friend with migraines.
Well, let me just say this, right off the top:
Whatever you are going through, your spouse, family member or friend is going through worse.
You are only experiencing secondary fallout from that person’s suffering. That person is the one who may be enduring excruciating pain.
But if you are researching this topic, I think you probably genuinely want to be helpful to the migraine sufferer in your life.
The feeling that you don’t know how to or aren’t doing enough may be a part of what makes you feel like you need help coping.
So to help you and your migraine sufferer, I have put together a list of suggestions based on my experiences as well as accounts I have read from others.
Here’s the Top 16 Ways to Help the Migraine Sufferers in Your life:
1. Ask where we are at in our journey.
Before attempting to help someone with migraines, the first step is to understand the context of those migraines.
Did the person just start experiencing them? Or has that person experienced migraines for many years now?
How long the pain issues have been going on will impact a person’s frame of mind as well as their expectations, needs and goals for the moment.
A person who has just been hurled unexpectedly into a world of pain for the first time may be in a very different place than someone who has been battling it for decades.
2. Ask if we are looking for ideas and solutions before trying to offer them.
It seems very common for people without migraines to try and fix them in people they meet. If someone learns we have migraines, often we begin hearing, “Have you tried ___?” “Well, my sister says ____ worked for her.” “I just heard about ____ on the news. Maybe it will make your pain go away.”
As a solution-minded person who has a tendency to try and fix a problem if someone mentions one to me, I totally get where this comes from.
So why might you want to forego it? Well, frankly, a lot of us with migraines have spent and continue to spend a ton of time researching potential solutions.
That means that while we are looking for answers, chances are good we already know about the “solution” you are offering.
This applies to veteran migraine sufferers—not necessarily to those who have only recently developed them.
That is one of the reasons it is so helpful to find out where someone is at with their journey. A person who has only recently started experiencing migraines may welcome your help.
I tend to get annoyed now, for example, when someone tries to offer me remedy ideas. But back when I first got migraines many years ago, I’d have been effusive with gratitude if someone had told me about Vitex, butterbur, feverfew, and other migraine treatments that are backed by research.
The other reason we sometimes get annoyed by “helpful” suggestions is when they are offered as a hopeful quick fix.
This betrays a lack of understanding of the condition, which very rarely has a fast, easy fix.
Even a remedy which gives us a dramatic improvement will generally not put our pain into total remission.
So if you want to help us find solutions, please ask first if that is what we want from you—and then be prepared to not find the answer in an instant.
If we have spent years on this search, you probably will too if you get invested in it.
3. Do not tell us, “Just _____, and you will ______.”
Much worse than trying to offer a person with migraines remedy ideas unasked for is an attempt to say that if we would just change something about our behavior or lifestyle, it would all go away.
“If you would just be more positive, you’d be okay.” “If you would just stress less, your pain will decrease.”
Most of us are doing our best in that respect; we have to in order to even wake up in the morning. We may also have been on top of the world the day our migraines started. These criticisms show a lack of understanding of the physical aspects of the condition, and do nothing to lower our stress.
4. Please do not tell us how amazingly healthy we look.
Some people may like to hear how healthy and gorgeous they look when they are having a rough day—but a lot of us don’t. We wish people could see the truth of how we feel on the inside. Having an outer appearance of health emphasized makes our pain—and us—feel invisible.
This doesn’t mean you need to withhold compliments. Just make sure that they are made while recognizing the context of a person’s difficult inner situation.
5. Do not assume you can empathize, even if you yourself have migraines. Every person experiences pain individually and subjectively.
Did you know pain is a deeply subjective experience? As this research describes:
“In experimental studies using carefully controlled noxious stimuli, tremendous individual differences are consistently observed. When reporting pain intensity using a visual analog scale with a range of 0–10 (with 0 being anchored by no pain sensation, and 10 being anchored by the most intense pain imaginable), healthy volunteers report ratings that range from slightly above 1 to slightly below 9(2). Simultaneous brain imaging identified patterns of activation that were consistent with these subjective reports. Highly sensitive individuals activated a number of brain regions important in the experience of pain more frequently and to a greater magnitude than insensitive individuals.”
In other words, the exact same stimulus can produce radically different pain perceptions in different individuals—and these can be measured through brain imaging.
It would be easy for someone in the study above who experienced pain just about a “1” to believe an individual reporting just below a “9” must be lying or exaggerating or trying to get attention.
But the brain imaging shows that this is not the case. Individuals who gave both high and low reports of pain levels were telling the truth.
There are numerous factors which influence pain sensitivity and perception. Some are physiological, some are genetic, others are psychological, and we are really just beginning to understand this aspect of pain science.
Many people are barely aware of just how widely experiences of pain can vary even from the same stimuli.
On top of that, even on a physiological level, migraines can vary quite a bit from one another.
So those two factors combined mean that one cannot make assumptions about another person’s experience of pain.
Your migraines might max out at a “2,” but someone else’s might max out at a “9.”
Additionally, how you experience a “9” and how they do might be very different.
It is good to show sympathy—feeling sad that the person has pain—and compassion—wanting that pain to end.
It is also helpful to empathize (demonstrate an understanding of what a person feels) when and to the extent you are able.
But it can be even more helpful to acknowledge the limitations of one’s empathy, and simply to respect the experiences of someone else, even though you cannot truly know them for yourself.
That is a very rare gift, and one that I know I, as a person with migraines, would deeply welcome.
6. Help remove triggers when we are susceptible to an attack.
One simple concrete way to help someone with migraines is to learn our triggers and help us avoid them.
If we mention we may be coming down with a migraine and we’ve told you that bright light can make it worse, simply not turning on a bright light or pulling open the drapes can be a big help.
If you know that MSG in our food can make a migraine worse or trigger one to start, bringing home something other than MSG-laden Chinese takeout for dinner will be appreciated.
7. It is okay to ask if we need help, and appreciated.
Whether or not we need or want help, just asking us is a big help, because it shows that you care. That is the most important thing you can do. And when it is the only thing you can do, it is more than enough.
8. If we tell you that you cannot help, please do not persist. We would like you to go about your own day and unburden yourself. We also may need to be left alone for a while.
If you have a great deal of affective empathy, or you are simply a very compassionate person, you may have a difficult time watching us suffer and feeling helpless to stop it.
But sometimes the very best thing you can do is nothing! Migraines can be very overwhelming, and oftentimes, all we can do is rest and interact as little as possible and wait until we feel better.
We don’t feel upset that you can’t fix it; even our doctors have failed to fix it. We can get even more stressed though when we feel like you are stressed out by us.
This can sometimes exacerbate a headache rather than help it go away. That doesn’t help us or you.
So please do not feel like you are burdened by your inability to help. We’re not looking for you to provide us with a miracle. We just want you to go on with your day and be patient. In fact, doing that will remove some stress, which does help.
We’re trying to be patient on our end with our situations so we can hopefully eventually get on with our days too.
9. Some of us do not like asking for help, and do not want to express our pain or feel less independent.
There are many reasons why some migraine patients may deliberately hide their pain, and may want to take care of themselves without help to the best of their ability:
- Some people feel like their pain is less “real” if it is not externalized through any sort of external acknowledgement.
- Stoicism is highly valued by cultures around the world. Some people feel “weak” if they express pain.
- Those who grew up in households where they were expected to take care of themselves may continue to have a hard time turning to others for help later in life.
- Some people less disabled if they do things themselves, even if it hurts them physically.
Those are just a few possibilities. Hopefully you know the person with migraines in your life well enough to know if this type of stoicism is a part of their personality.
If it is, that person probably would like you to behave as if nothing is wrong. Showing concern is appropriate, but showing too much concern may not be welcome. Offers to help may also be rejected repeatedly. It is best to respect this.
10. On the other hand, some of us experience even more stress if we try to hide our pain, so please understand this.
Not every person with pain issues has a stoic disposition. In fact, many of us are quite the opposite.
As quoted here, John Forsyth, Ph.D., director of the Anxiety Disorders Research Program at the University at Albany, State University of New York says, “Pretending not to be in pain is stressful in itself. Our culture says that it’s not OK to feel pain and stress. But when we sidestep our inner anguish, our lives then morph into being all about avoiding pain.”
In other words, trying to hide pain continuously is stressful for a couple of reasons. First of all, it demands a tremendous amount of energy and willpower when very little may be present, and secondly, it involves a great deal of social anxiety.
We are being told that our physical pain is somehow more inconvenient to others than it is to us. We do not have the option of pretending our pain does not exist.
When the people who are supposed to support us demand that we use energy and willpower we don’t have to hide it so they don’t have to think about it, that is really stressful (and frankly, offensive).
You can help out the migraine sufferer in your life by not demanding that they constantly behave as if everything is fine, especially in the middle of an attack.
If seeing a person clutching at their head in bed and moaning in agony is too much for you, please go to another room or put some headphones on—don’t demand that person sit up and shut up. Doing so will only make their physical and psychological distress worse, and probably strain the relationship.
11. Sometimes an expression of pain is a call for help. Other times it isn’t. If you do not know which it is, please ask, and accept our answer.
Speaking of moaning in agony, this seems to be a matter of some confusion.
I recall reading in a paper (which I have misplaced) that all verbal and nonverbal expressions of pain are regarded as social behaviors. This does seem to be how they are often interpreted. If a person is moaning in pain, surely they must be asking for help. Right?
With many people, I am sure this is true! But it is not universal.
When other people are not around, I am usually much louder and more vocal about my pain than when they are, for the simple reason that I am not putting effort into repressing my vocalizations. When agony reaches a certain pitch, for me, moaning in pain is just the automatic outcome.
Trying to keep it in just adds to my stress, since I don’t have the energy or the will to do so. Not only does it demand something I don’t have at the time to give, but it also angers me that such a demand is being made in the first place.
The bottom line is that I am not asking for help. If I were, I would say “I need help.”
I know I’m not alone in this, because I have known other people who likewise tend to express their pain by default, and struggle to repress those expressions.
So how can you tell whether the person you are dealing with needs your help or not? I recommend asking. If they insist that they don’t need help, don’t press them. They probably just need to be tolerated until it is over.
Again, we really appreciate that you want to help. But sometimes the best way to do that is by accepting that you cannot help beyond being patient.
12. Please believe us.
Many, many people with migraines or other types of head pain have been told at some point that it is “all in our heads”—i.e. we are either experiencing an expression of mental illness, or we are making it up.
Often this accusation comes from the last place it should—a family member, friend, or doctor.
There is really no way to put into words what an isolating, invalidating feeling it is when someone we trust refuses to trust us and support us—all because we look “healthy.”
When my migraines started, my family told me I was hypochondriacal, and that my pain was imaginary.
At least one doctor reacted to me as if I were an addict seeking a fix—not a person with severe pain looking for help.
After enough of these types of reactions, I cannot tell you what a relief it was the first time I saw a healthcare professional who acknowledged my pain was real.
If you can provide that kind of respect and acknowledgement to someone who has migraines—or any other form of chronic pain—that by itself can be a huge help.
13. Please understand that we run out of spoons.
If you are not familiar with the “Spoon Theory,” you can read about it here.
Basically, “spoons” are shorthand for units of energy and willpower we have available each day. Every task we need to complete takes away a spoon, and as folks with pain issues, we only have a limited supply of them on days where our migraines are present.
When we run out of spoons for the day … we’re done, until we get enough rest to restore some of them.
What happens if we try and persevere on despite being out of spoons? We can borrow against tomorrow’s spoons, in a sense—at a price. We’ll pay for it with interest, damaging our physical and psychological health even further.
The page also mentions, “Some people with a disability may not be fatigued by the disabilities themselves, but by the constant effort required to pass as non-disabled.”
This emphasizes what I have been saying about pain expression and suppression, and why we sometimes cannot simply shut up and pretend we’re okay when we’re not. Doing so uses up spoons we don’t have, and that makes us worse.
“Can’t you just power through it?” is a common expectation in our culture. In fact, it is really hard to even get disability payments with migraines.
Sadly, it isn’t hard to get fired over them.
If you know someone who works full time with chronic migraines, there is a good chance that they are depleting their spoons every day before they even make it home for the evening.
The kindest thing you can do is let someone rest and recover from pain when they need to. They really can’t “just power through.”
14. Please do not make the assumption that migraines are the only problem we have. Often, they are combined with other conditions.
Migraines are bad enough on their own, but did you know that they often exist with other conditions? For example:
- Tension headaches
- Myofascial pain
This paper adds the following: “The comorbid illnesses in patients with migraine include stroke, sub-clinical vascular brain lesions, coronary heart disease, hypertension, patent foramen ovale, psychiatric diseases (depression, anxiety, bipolar disorder, panic disorder, and suicide), restless legs syndrome, epilepsy and asthma.”
If you know someone with migraines, it is useful for you to ask them if they have any co-morbid conditions and not make assumptions about the origins of symptoms.
15. Sometimes it helps us not to have to deal with physically or mentally demanding tasks.
In terms of concrete, simple ways to help, perhaps the most useful thing aside from not deluging us in triggers is simply to offer to take care of tasks which exceed our spoons at the moment—or at least not ask us to take on anything extra.
When I have a migraine attack, I do everything I can just to get through my work. I sure appreciate it if someone offers to take over a hard task for the day—or even just says that they don’t mind if I do it tomorrow.
16. If in doubt, please just ask us what we do and do not want and need.
What’s the best rule of thumb when it comes to helping out a person with migraines? Just ask that person straight up what they would most appreciate.
Every person is unique in how they perceive pain and in how their body and mind process unpleasant experiences.
Really, just asking shows that you care, and that you aren’t making assumptions. That alone is awesome.
To sum up, it can be hard to watch someone be in pain, but it is helpful to remember that you are not the one in pain—and that the person with the migraines doesn’t want things to be difficult for you.
On top of that, it is important to keep in mind that migraines are not a condition with a quick, easy cure. For many people, they will come and go over the course of a lifetime.
It is perfectly okay that you can’t fix it. Your willingness to help and the fact that you care are sometimes all the help you can give.
And that’s all that we need. Hopefully, knowing that, you’ll find it easier to cope.