When someone close to you has bipolar disorder: how to stay beside them without losing yourself

“He rang me at three in the morning to say he had found premises for a bar. By dawn he had a name, a logo and a list of people who were going to invest. He hadn’t slept for three nights and I had never heard him so sure of himself. Two months later he couldn’t get out of bed and didn’t answer a single message.”

This, or something like it, is how relatives often describe the moment they first sensed that it was no longer about character, a bad patch or too much work. Someone you have known all your life is, for a few weeks, somebody else: faster, louder, without brakes. Then comes a stretch when he is barely there at all. And in between there are months when he is himself again, and you wonder whether you imagined the whole thing.

This post is for you, the person standing beside someone with bipolar disorder: a partner, a brother, a daughter, a parent, a friend. I would like to explain what the diagnosis means, why a psychiatrist and medication come first, what you can do and what you cannot, and how not to lose yourself along the way.

What bipolar disorder is and what it is not

In everyday speech “bipolar” has become a label for anyone who is cheerful in the morning and grumpy by the afternoon. That has little to do with what the word means in psychiatry. Bipolar disorder, listed in the international classification of diseases as bipolar affective disorder, is a mood disorder in which episodes alternate: periods of elevated mood and drive (mania, or the milder hypomania) and periods of depression. Between episodes, mood is often stable for a long time.

The key word is episode. This is not a mood that shifts from hour to hour but a state that lasts days or weeks and noticeably changes sleep, energy, thinking and behaviour. In mania a person needs very little sleep and is not tired, speaks fast, has racing thoughts, makes plans that grow beyond all proportion, spends money freely and becomes irritable when anyone gets in the way. Hypomania is a milder form of the same thing: from the outside it can look like a very productive, talkative spell, while those close by sense that something is “too much”. The depressive episode is often the one that lasts longer, and the one that brings people to seek help at all.

How common is it? In a large international study in which Kathleen Merikangas and colleagues pooled surveys from eleven countries, the lifetime prevalence of bipolar spectrum disorders was about 2.4 per cent, of which 0.6 per cent was bipolar I disorder (with at least one manic episode) and 0.4 per cent bipolar II (hypomania and depression). This is not a rare illness. You probably know more people who have it than you realise.

The reverse holds too: not every burst of high spirits is hypomania and not every flash of anger is an episode. People with bipolar disorder have, like everyone else, good days and bad days, opinions you disagree with, and the right simply to be in a bad mood now and then.

Why the first stop is a psychiatrist

With many kinds of distress, psychotherapy can be the first step. With bipolar disorder it is not. The diagnosis is made by a psychiatrist, and it is often not straightforward: because people usually seek help when depressed, and do not remember hypomania as a problem, years can pass before the illness gets its proper name. That is why what relatives can describe is so valuable to a psychiatrist. You may be the only one who remembers those three weeks of almost no sleep.

The foundation of treatment is medication, above all mood stabilisers, of which lithium is the best known. Clinical guidelines, such as the British NICE guideline, are clear on this: psychological help complements medication, it does not replace it. Which medicine, at what dose and for how long is a decision for the psychiatrist and the person being treated. Not for you, and not for me. As a therapist in training in marriage and family therapy, I do not diagnose and I do not prescribe; I wrote about who may do what in Who may diagnose, who may prescribe, and who leads the process.

There are, though, two things about medication worth knowing as a relative. First: an accurate diagnosis matters partly because depression in bipolar disorder is not treated in quite the same way as other depressions, and a psychiatrist chooses medicines with both directions of the illness in mind. Second: stopping medication abruptly, on one’s own initiative, is among the common preludes to a new episode. The wish to come off medication is understandable, especially when a person feels well or is troubled by side effects. But that is a conversation for the clinic, not an overnight decision. In Slovenia the route to a psychiatrist generally runs through your GP. I have gathered the situations that cannot wait in When you need a psychiatrist first: signs that therapy is not the first step.

What a family changes and what it cannot

The family did not cause bipolar disorder and the family cannot cure it. It can, however, influence how the illness runs its course. In a randomised study, David Miklowitz and colleagues compared two groups of people with bipolar disorder, all of whom were taking medication: one also received family-focused psychoeducation (learning about the illness, and practising communication and problem-solving together with relatives), the other a briefer form of crisis support. Over two years of follow-up the first group had fewer relapses and longer periods without an episode.

Why would that work? Part of the answer lies in the atmosphere at home. For decades researchers have measured what is called expressed emotion: how much criticism, hostility and emotional over-involvement there is in a family. A meta-analysis by Ronald Butzlaff and Jill Hooley showed that high expressed emotion predicts relapse in mood disorders. This is not a reproach to relatives. Criticism and over-control are almost always an expression of fear and exhaustion. It is good news, though, because the tone at home can be changed, whereas genes cannot.

So what is your role? To know what the illness is. To be able to tell the person from the episode. To notice early signs and have an agreement about what you do then. And to become neither a doctor nor a guard.

Early signs of an episode

Episodes rarely arrive overnight. They are often preceded by days or weeks of small changes which, in the same person, are surprisingly similar from one episode to the next. In a study published in the BMJ, British researchers taught people with bipolar disorder to recognise their own early signs and seek help quickly when they appeared. The time to their next manic episode was considerably longer; for depressive episodes there was no difference. Mania, then, is somewhat easier to catch early, while depression creeps in more quietly.

Sleep has a special place. As early as the 1980s Thomas Wehr and colleagues described loss of sleep as a common shared pathway into mania: a sleepless night because of travel, worry or a party can set off a loop in which a person sleeps less and less and speeds up more and more. This is why psychiatrists talk so much about a regular rhythm. I wrote about what sleep does to emotion in all of us in Sleep and emotion: why everything hurts more after a bad night.

When you are watching for signs, it helps if not everything lives in your head. Some people find a simple mood diary or sleep diary useful, kept by the person themselves and brought along to the psychiatrist. The emphasis is on “themselves”: a diary kept in secret by someone else about an adult is not a tool, it is surveillance.

The conversation you have when things are calm

The worst time to talk about the illness is in the middle of an episode. In mania a person does not feel that anything is wrong; often they feel better than ever. In depression they have no strength. So the most important agreements are made in a stable period, when both of you can think clearly. A conversation like that might sound something like this (composed for illustration, not a real person):

“I’d like to ask you something, and I don’t know how to do it without sounding as if I’m checking up on you.”
“Try.”
“When you stopped sleeping in the spring, I noticed a week before you did. I didn’t know whether I was allowed to say anything.”
“I’d probably have bitten your head off.”
“Probably. That’s why I’m asking now. What should I say if I notice it again?”
“Tell me I’ve slept less than five hours three nights running. That’s a fact, I can’t argue with it. And tell me to ring the clinic while I still care.”

Something important happens in this short exchange. The relative does not guess and does not act behind his back; she asks permission. And the person with the illness chooses for himself the sentence he will be prepared to hear. When the hard moment comes, his sister is no longer speaking for herself but reminding him of his own words.

An exercise: an agreement for calm times

What the two of them did quickly in the dialogue, you can do more thoroughly. The first step is yours alone, and you can do it today.

1. Write down what you have noticed. Take a sheet of paper and think back to the last episode upwards and the last one downwards. What did you notice first? Write behaviour, not judgement: “he slept four hours”, not “he was impossible”.
2. Ask permission. At a calm moment, say that you would like to agree on something for the harder times, and ask whether he is willing. If he says no, respect that and try again in a few weeks.
3. Choose three signs in each direction together. Compare your observations. The signs that count are the ones he recognises too, written in his words.
4. Beside each sign, write one agreed step. What you may say, whom he rings, when you may ring. If he wishes, add an agreement about money or car keys during mania. That should be his decision, made in advance.
5. Keep the sheet and set a review date. Each of you should have a copy. Read it again in six months and correct whatever no longer holds.

For a format you can use the crisis plan from the knowledge base. Better still if a plan like this is drawn up with the psychiatrist, or at least seen by them.

When the episode is already here

In mania or marked hypomania, do not argue about content. You will not persuade him that the business idea is not brilliant, and he will experience every objection as an obstacle. It helps more to speak briefly and calmly, to reduce stimulation (fewer people, less noise, less alcohol in the house) and to postpone big decisions: “Let’s talk about that on Monday.” Insults thrown in this state hurt, but try not to take them as his final word on you. Above all: reach for the agreement and ring the psychiatrist or the GP. The sooner an assessment happens, the less damage the episode leaves behind.

In depression the task is almost the opposite. What helps here is not urging him to pull himself together but quiet presence and small, concrete steps: a shared meal, a ten-minute walk, company on the way to an appointment. I wrote in more detail about being beside someone in depression without burning out yourself in How to support someone with depression without burning yourself out, so I will not repeat it here.

When you do not wait

Bipolar disorder is associated with a markedly increased risk of suicide, particularly in depressive and mixed episodes, when despair and agitation are present at once. If the person close to you talks about death, about being a burden to everyone, or seems to be saying goodbye, ask about it directly. The question does not plant the thought; it often brings relief. I described how to open that conversation in When you think it would be better if you weren’t here: on suicidal thoughts.

When the danger is immediate, when someone in mania is so accelerated that they are putting themselves or others at risk, or when they lose touch with reality, call 112 in Slovenia. For a conversation in distress there is the mental health crisis line (Klic v duševni stiski) on 01 520 99 00 in Slovenia (every night from 7 pm to 7 am) and the Samarijan confidential helpline on 116 123 in Slovenia (24 hours a day, free of charge). You can ring these numbers yourself, as a relative, when you no longer know what to do.

Looking after yourself is not betrayal

Research on relatives of people with bipolar disorder consistently describes a heavy burden: sleepless nights, money worries, fear of the next episode, and loneliness because nobody talks about it. In a large American study, Deborah Perlick and colleagues found that caregiver burden was linked to more depressive symptoms and poorer physical health in the caregivers themselves. An exhausted relative is not only unhappy but also finds it harder to stay calm, and with that the loop from the earlier sections closes.

So looking after yourself is neither a luxury nor a betrayal. It means having at least one person you can tell how things really are. Knowing your boundaries and stating them in a calm period: what you will not pay for, what you will not cover up, when you will leave the room. Not becoming the keeper of the medication. You can ask, you can worry, but you cannot count someone’s tablets indefinitely without turning from a partner or a sister into a supervisor. And not putting your own life on hold until “things are better”, because this is an illness people live with for a long time.

I describe a similar balance between helping and taking part in the illness, for a different condition, in When someone you love has OCD: how to help without taking part in the rituals. The two conditions are very different, but the relative’s question is related: where does support end and something begin that serves neither of you.

This is also where I can offer something myself. I do not treat bipolar disorder; that is a psychiatrist’s work. But therapy can be a space for you as a relative, or for the two of you as a couple, to talk about what the illness does to the relationship: trust after an episode, the resentment you are not supposed to show, the fear you carry alone. Sessions take place in person in Ljubljana, and I also work with English-speaking clients.

Where this post does not hold

Everything above assumes that a diagnosis has been made and that the person at least partly agrees to treatment. Often that is not the case. If there is no diagnosis, let this post be a reason to suggest an assessment, not proof that you “are right”. A similar picture can have other causes, from thyroid function to certain medicines and psychoactive substances, and only a doctor can tell them apart.

A second limit: watching for early signs can tip over into meeting his every moment of joy with a look that says “is this the start?”. People with bipolar disorder often say this is one of the hardest things, that nobody believes in their good days any more. A person is not their diagnosis; I write about that in A diagnosis is a map, not a name for you: what the ICD says and what it does not.

A third: an adult has the right to decide about their own treatment, even when the decision seems wrong to you. Except in situations of immediate danger, you cannot force them. Sometimes all that is left is to say what you see, where your limits are, and that you will be there when he is ready.

And the last, the hardest: “staying beside him” is not a duty at any price. If there is violence in the relationship, if children are at risk, or if you are at the end of your strength, stepping back may be the right decision. Where there is violence, the SOS helpline for women and children who are victims of violence is on 080 11 55 in Slovenia, and in an emergency the police are on 113 in Slovenia. The illness explains a great deal. It does not mean you have to put up with everything.

What to remember

• Bipolar disorder means episodes of mania or hypomania and of depression that last days or weeks, not a mood that shifts from hour to hour.
• A psychiatrist makes the diagnosis and medication is the foundation of treatment; psychological help and family complement it, they do not replace it.
• Early signs tend to repeat in the same person. Most often, sleep changes first.
• Agreements are made in a calm period and in his words; in the middle of an episode you simply refer back to them.
• Your exhaustion helps no one. Boundaries, rest and support of your own are part of helping, not the end of it.