Living with migraine: acceptance that isn’t giving up

On the fridge hangs an invitation to her best friend’s wedding. There are still three weeks until the reply is due, but she already knows what lies ahead: she won’t be able to promise. She can say “I’ll be there” and then, on the wedding day, lie in a dark room with a bucket beside the bed. She can say “I can’t come” and give up something she wants. Or, as she has in recent years, she can say “I’ll try” — and with those very words she feels something inside her grow tired.

This is what life with migraine looks like. Not just the hours of pain, but everything that arranges itself around it: plans with an asterisk, apologies, calculations, guilt. And the same question over and over — should I fight it or accept it? It seems as if those are the only two options. One means an endless battle, the other something that sounds like surrender.

In this post I will write about a third way: acceptance that isn’t giving up. About what acceptance means in the psychology of pain, what research shows about it, how it shows up in relationships and where its limits lie.

Migraine is a disease — a starting point, not an excuse

Before I begin, something that has to be clear with this topic. Migraine is a neurological disease, not a psychosomatic symptom. It has a hereditary basis, its own diagnostic criteria and its own mechanisms in the brain. It does not arise from thinking the wrong way, and it does not disappear when a person “comes to terms with it”.

How varied it can be is clear from the international classification of headache disorders alone. It speaks of chronic migraine when a person has headache on at least 15 days a month for more than three months, with at least 8 of those days having the features of migraine. For some people, then, attacks are rare; for others, days with pain outnumber days without. For that reason alone, there is no single recipe for “living with migraine”.

Diagnosis, medication for attacks and preventive treatment are decided by your doctor and neurologist — I will give no advice here about medication. If you don’t yet have proper care, that is the first step. I described how to get it through the public system in Slovenia in Referral, waiting list or self-funded: how you actually get help here. My contribution as a psychotherapist is different: how to live with the part of the illness that remains even with good treatment — with stress, anxiety, relationships, and the question of how to keep a life that is your own.

Two wrong answers: giving up and fighting

When people with migraine talk about their relationship with the illness, they often move between two extremes.

Giving up sounds like this: “There’s no point. I won’t plan anymore. I won’t sign up for that course, because I’ll miss it anyway.” Life slowly shrinks to whatever is safe. At first glance this looks like resignation, but in truth it is often a quiet sadness that was never given room, and despair dressed up as practicality.

Fighting sounds different: “I won’t let it beat me. I’ll go to work, even if it hurts. Nobody will know.” There is a lot of strength and dignity in this stance. But in the long run it often means living in constant tension: hiding, calculating, exhaustion after every day “got through”, and the sense that every attack is a personal defeat.

Both stances are understandable. Both try to protect something — the first from disappointment, the second from loss. And both share one thing: migraine is still at the centre. When you give up, it decides what you will do. When you fight, it decides what you fight against.

What acceptance means in psychology

In everyday language the word acceptance often sounds passive: you resign yourself because you can’t do anything else. In the psychology of pain, however, it has a more precise and far more active meaning. You can find a short explanation in the knowledge base under acceptance.

The British psychologist Lance McCracken, who has studied pain acceptance for decades, describes it as having two parts. The first is willingness to experience pain without constantly struggling to make it go away. The second is continuing the activities that matter to you, even when the pain is there. It is not about liking the pain, approving of it or giving up on treatment. It is about your life not waiting until the pain is gone.

This idea is at the heart of acceptance and commitment therapy (ACT), developed by Steven Hayes and colleagues. You will find it in the knowledge base under acceptance and commitment therapy. Its starting point is that suffering is not just the pain itself, but also everything we do to avoid it — and that a life can get lost in that very avoidance. I described how avoidance helps today and harms tomorrow in Anxiety and avoidance.

With migraine, this distinction matters. The pain of an attack is something you don’t choose. But how you deal with everything around it — fear of the next attack, giving things up, guilt and the thoughts that fire at the first sign — is very much in your hands. I wrote more about those thoughts in Migraine and pain catastrophising: what the research shows.

What research shows about acceptance

In a 2003 study of people with chronic pain, McCracken and Christopher Eccleston compared two things: how much people used classic coping strategies (distraction, talking themselves through it, looking for ways to reduce the pain) and how much they accepted the pain in the sense described above. It turned out that acceptance was more strongly linked to better functioning — less disability, less depression and less pain-related anxiety — than the coping strategies were.

Later, McCracken and Kevin Vowles (2014) summarised research on acceptance and commitment therapy for chronic pain. Their conclusion was that this approach has good research support in chronic pain, and that its effects are often visible precisely where people care most: in how much they can work, spend time with others and live by their values.

It is important to say that most of this research was carried out in chronic pain in general — back pain, musculoskeletal pain and the like — and not specifically in migraine. Studies in migraine exist, but there are fewer of them. So I transfer these ideas carefully: as a framework for reflection, not as a promise that it will work the same way for everyone.

Life between attacks

When we talk about migraine, we mostly talk about attacks. But a large part of the burden happens between them. People with migraine often describe living with pain in the background even on pain-free days: checking the weather, counting hours of sleep, turning down a glass of wine at a party, not daring to buy concert tickets two months ahead. There is more about how anticipation becomes a burden in its own right in the post on fear of the next attack.

This is where acceptance shows most in practice. It is not only something you do during an attack, but a stance you bring to the days, which are far more numerous. One of the most useful questions you can ask yourself is: what would you do if migraine weren’t making the decisions for you? And then: which small part of that is possible even with migraine?

This doesn’t mean giving up caution. If you know that lack of sleep often triggers an attack, it makes sense to protect your sleep. The difference lies in whether you act this way so that you can live, or whether avoidance has become a goal in itself. Caution that lets you go to the wedding is something other than caution that stops you going anywhere.

When illness sits at the family table

Migraine doesn’t happen to just one person. When a mother or father lies in a dark room, the silence spreads through the whole home. When a partner cancels a visit to friends for the third time, something builds up in the other person too. I wrote about how migraine affects relationships — cancelled plans, the invisibility of the illness and the quiet anger nobody dares to voice — in What migraine does to relationships: cancelled plans and an invisible illness.

The large American CaMEO study, published in 2019 by Dawn Buse and colleagues, asked people with migraine about exactly this. Many said that migraine had harmed their relationship with their partner and with their children, and many expressed the belief that they would be better partners and parents if they didn’t have migraine. That last thought matters, because it shows how deeply an illness can reach into a person’s sense of their own worth.

Acceptance therefore has a relational side too. This is how a conversation between two partners might sound (composite, not a real person):

“Sorry. Another weekend ruined because of me.”
“It’s not because of you. It’s because of the migraine.”
“Same thing.”
“It’s not the same thing. I’m angry, but not with you. I’m angry because I was looking forward to it.”
Silence. “So was I.”
“I know. We’ll go another weekend. And if it gets you again then, I’ll go to lunch on my own and bring you back a slice of cake.”

In this short exchange something happens that is rare with migraine: disappointment is spoken without becoming an accusation. The illness and the person are separated. Migraine stays as the third one in the room — something they face together, not something one has done to the other. In relational family therapy, in which I am training, this is often one of the key shifts: when a couple stops looking for someone to blame and starts looking for a way to live with something that is nobody’s choice.

Grief that needs to be given room

Acceptance does not come instead of sadness. Often it only comes after it.

People with migraine lose many things that those around them don’t see: days, career opportunities, performances, trips, spontaneity, the ability to take their own body for granted. These losses rarely get room, because in other people’s eyes migraine is not a “real” illness — there is no plaster cast, no scar, just someone who wasn’t there again. And because the losses aren’t acknowledged, they can’t be grieved. They remain as a quiet bitterness or as anger at oneself.

Part of acceptance is therefore allowing yourself to grieve for what the illness has taken or changed. I wrote in more detail about grieving for lost health in Loss of health: when a diagnosis changes your whole future. Here I will just stress this: acceptance that skips over sadness is not acceptance but suppression. Once the sadness has been spoken, though, it often turns out that underneath it there is still a desire to live. And that desire is what acceptance grows from.

Self-compassion instead of self-blame

When people with migraine talk to themselves, they are often harsh. “You forgot to drink water again.” “Why did you stay up so late?” “You knew red wine would do it.” Looking for triggers makes sense and helps. But when it turns into a search for guilt, every attack becomes proof that you did something wrong.

Kristin Neff, who began researching self-compassion systematically, describes it as having three parts: kindness towards yourself instead of judgement, an awareness that suffering is part of the human experience and that you are not alone in it, and mindfulness — the ability to notice how you are without getting lost in it. I wrote about her research in Self-compassion instead of self-criticism: what Kristin Neff’s research shows.

With migraine, this means something very practical. When an attack starts, the first question is not “what did I do wrong” but “what do I need now”. When you miss an event, you don’t tell yourself “I’ve ruined everything again” but “this is a loss and I’m sorry about it”. Self-compassion is not indulgence. It is the condition for being able to look after yourself in the long term, not just in bursts of guilt.

Exercise: values for a good, a middling and a bad day

You can do this exercise today, with a pencil and a sheet of paper. It doesn’t replace treatment, but it helps make sure your life isn’t waiting for a migraine-free day.

1. Write down three things that matter to you in life. Not goals but directions: being close to your children, creating, being a good friend, learning. If you don’t know where to start, use the personal values list from the knowledge base.
2. For each value, write down how you would live it on a good day. For example: “I take the children on a day trip.”
3. Then, how you would live it on a middling day. A day when you are not having an attack but are tired or tense: “We play a board game at home.”
4. And finally, how on a bad day. Even during or after an attack, a tiny version is often possible: “I lie down and they tell me how school went.”
5. Choose one action for this week — and after the week, don’t grade yourself, just notice. What happened? How was it? What would you do differently next time?

The point of the exercise is that a value doesn’t vanish when a bad day comes. Only its size changes. That is exactly what acceptance is: your values stay, even as your actions adapt to the illness.

When acceptance isn’t the right answer

Because acceptance sounds so appealing, it is easy to misuse. So here are some limits.

Acceptance is not giving up on treatment. If you don’t yet have a diagnosis, if treatment isn’t working or if your attacks are changing, the right answer is another visit to your doctor or neurologist, not resignation. A lot is happening in migraine treatment, and “that’s just how it is” can be a premature conclusion.

Acceptance is not something others can impose on you. If someone tells you “you’ll just have to live with it” so that they don’t have to change anything — at work, at home or in their plans — that is not acceptance but silencing. Adjustments at work and help at home are legitimate needs, not special favours.

Acceptance doesn’t treat depression. Migraine and depression often occur together. If for several weeks you have felt no joy, everything seems pointless, you are withdrawing from people or you have thoughts that it would be better if you weren’t here, this is not a matter of attitude but a reason to talk to a doctor or psychiatrist. If you are in distress in Slovenia, you can call the crisis line Klic v duševni stiski on 01 520 99 00 (from 7 pm to 7 am) or the Samaritans helpline on 116 123 (every day, 24 hours), and in an emergency 112.

Acceptance is not a state you reach once and for all. Some days will be days of fighting, and some days of giving up. That is not failure. Acceptance is more like a direction you keep returning to than a destination you arrive at. If you would like to explore this in person, I also work with English-speaking clients in Ljubljana.

What to remember

• Migraine is a neurological disease. Treatment belongs with your doctor and neurologist; psychological work complements it.
• Acceptance is not giving up. It means willingness to experience pain while continuing what matters to you.
• Research in chronic pain links acceptance to better functioning and less distress; in migraine there are fewer studies.
• Acceptance doesn’t bypass grief, but often comes through it — and it has a relational side too.
• Values don’t disappear on a bad day; only the size of the action changes.