How does dialysis affect a patient's psychology? Read what patients and families can do about session days, fluid limits, anger and fatigue along the way.
In the morning the transport vehicle pulls up at the door, then four hours in the chair, exhaustion on the way home, a little recovery the next day and the same journey again. For someone who goes to dialysis several days a week, the calendar is now drawn around session days. Dialysis patient psychology is a response not only to kidney disease, but to having the rhythm of life set by a machine. Some patients meet this change in the first months with anger, some with silence, and some with the thought "I'm no use to anyone any more." In this article I look at what happens in the inner world of someone starting dialysis, which words family and loved ones can use to offer support, what changes with age, and when psychological support may become necessary. Every decision about medical treatment should be made together with the nephrology team who follow you; this article focuses only on the emotional side.
Why Does Dialysis Patient Psychology Come Under So Much Strain?
In many chronic illnesses, treatment sits at the edge of daily life: a medication, a check-up every few months. Dialysis, however, settles right in the middle of life. That is why the adjustment process carries difficulties of its own.
- Having your time taken away. Spending hours on certain days of the week in a hospital or dialysis centre limits plans such as work, holidays and family visits. Even travelling back to your home town for a religious holiday, as many families in Turkey do, requires separate arrangements.
- Constant reminders of the body's limits. Fluid and dietary restrictions make the person think about their illness with every glass of water and every plate. Having to be careful while everyone else at the table eats freely can deepen the feeling of loneliness.
- A sense of dependence on a machine. The thought "my life is tied to a device" stirs deep helplessness in some patients and anger in others.
- Fatigue and mood swings. Exhaustion after sessions, disrupted sleep and physical discomfort also strain emotional resilience.
- Loss of role. For someone who supported the household, looked after grandchildren or was always the first to help the neighbours, "now needing other people's help" is an experience that shakes their sense of identity.
None of these reactions is "weakness". They are understandable responses to a major life change. You can find a broader picture of the emotional burden of living with a long-term condition in the article on chronic illness psychology.
What Feelings Come Up When Starting Dialysis?
The decision to start dialysis is often experienced as a turning point. Feelings that commonly appear in the first weeks include the following:
Shock and denial
The hope that "maybe in a few months it won't be needed" can lead some patients to miss sessions in the early period or not take the restrictions seriously. This is a sign that the person has not yet been able to absorb the new reality; rather than seeing it as stubbornness, it calls for patient conversation.
Anger
Anger may be directed at healthcare staff, at the family or at oneself. The question "Why me?" is asked often. Anger is an attempt to regain lost control; when it is met well, it softens over time.
Grief
A person who starts dialysis grieves, in a sense, for their old life: the days when they could travel freely, the long chats over endless glasses of tea, the years when they could work without tiring. Noticing this grief and giving it a name brings the person relief.
Anxiety
Will something go wrong during the session, will the access site cause problems, how will the test results come back? These questions keep anxiety alive, especially in the first months. Some patients also enter the organ transplant process; I discuss the particular weight of that wait in the article on waiting for an organ transplant.
Dialysis Patient Psychology by Age
The emotional impact of dialysis takes different forms depending on the stage of life the patient is in.
A child on dialysis
For children, the hardest part is often not the treatment itself but being kept away from school, play and friends. Rather than long medical explanations, a short and concrete description is easier for a young child to grasp: "Your kidneys are having trouble cleaning extra water and waste out of your body, and this machine helps them." Colouring, a storybook or a tablet game during the session helps the time pass and supports a sense of control. Instead of telling the child "Don't cry, look, everyone is watching you," saying "I know you're fed up. Shall we pick a game together?" shows them their feelings are accepted.
A teenager on dialysis
Adolescence is the age of gaining independence and wanting to be like one's peers. Dialysis challenges both independence and the wish to "look normal". A teenager may feel embarrassed about keeping to fluid limits in front of friends, or may sometimes deliberately bend the restrictions to stay in control. In that case, instead of long lectures, it helps to ask: "It seems hard to manage this in front of your friends; how could we make it easier?" Being able to talk directly with the team about their own treatment also supports a young person's autonomy.
An adult on dialysis
For a working adult, the biggest worries are usually work, income and their role within the family. At a time when the cost of living is rising, arranging working hours around sessions, the fear of losing one's job or thoughts of early retirement can be a serious source of stress. Roles between partners also change; while one person's load grows, the other may feel guilt and helplessness.
An older person on dialysis
In older patients, dignity, autonomy and loneliness come to the fore. Being put into the transport vehicle, having everything planned for them and being talked about in their presence can lead a person to feel like a "burden". Involving them in decisions as much as possible, letting them choose who accompanies them to sessions and not building every conversation around the illness protects their dignity.
What Should Family and Loved Ones Say, and What Should They Avoid?
Relatives of a dialysis patient often do not know what to say. The fictional examples below are meant to give an idea of the attitude behind the words.
Sentences that support:
- "The session was long today, you must be tired. If you like, we can just sit quietly for a bit."
- "The fluid limit must be really hard. How can we make mealtimes easier for you?"
- "Let me take you on Thursday, and on the way back we can stop at the market."
- "It makes complete sense that you're angry. You can tell me about it."
Sentences that tire or hurt:
- "If you'd been a bit more careful, it wouldn't have come to this." Blame makes an already difficult adjustment even harder.
- "What harm would a little water do? One glass won't matter." Even when said kindly, this undermines the treatment team's advice; decisions about restrictions belong to the doctor.
- "Keep your spirits up and you'll get better." Linking mood to the outcome of treatment leads the person to blame themselves on the days they feel low.
- "The neighbour's husband was on dialysis for years too, and in the end..." Other people's stories, especially negative ones, increase anxiety.
Then there is the matter of the table. In Turkey, hosting guests, festive meals and conversations over tea are at the heart of social life. Insistently offering food to someone on dialysis, or saying "One bite won't hurt," pushes them either to break their restrictions or to keep away from social settings. A short word to the host in advance reduces this tension.
For partners and other adults in the home, finding a balance also matters. Watching the patient's every move, counting every glass or constantly warning "Don't eat this, don't drink that," even when it comes from love, can make the person feel under surveillance. Talking about the restrictions together at a calm moment and leaving responsibility with the patient as far as possible protects both the relationship and the person's self-confidence.
Dialysis can narrow a life; but what gives that life its meaning is not the hours spent on the machine, it is the relationships and small joys outside those hours.
Everyday Suggestions for a Dialysis Patient
The suggestions below do not replace medical advice; they are small steps that support emotional adjustment.
- Making session time meaningful. Audiobooks, favourite music, a radio programme, handicrafts or video calls with loved ones can turn those hours into something other than "lost time".
- Replanning the week. Separating dialysis days from non-dialysis days and placing enjoyable activities on the days when energy is higher increases the sense of control.
- Naming the feeling. Saying "I'm angry today" or "I feel low today" allows a feeling to be noticed before it grows.
- Connecting with the community at the dialysis centre. A natural solidarity can develop between patients who sit side by side in the same chairs for weeks. These bonds can ease loneliness.
- Writing down questions. Noting what you want to know about treatment in a notebook and asking the nephrology team reduces the anxiety that comes from uncertainty.
- Leaving small decisions to the patient. Choices such as which day to invite guests, who will accompany them to the session or which series to watch in the evening may seem trivial. Yet when most of life is tied to a schedule and rules, these small decisions make the person feel they are still in charge of their own life.
- Nourishing an identity beyond the illness. The grandfather who tells his grandchildren stories, the neighbour who tends the communal garden, the retired teacher who writes to former colleagues… Making visible the parts of a person that lie outside being "a dialysis patient" protects their sense of worth. When loved ones show interest in these sides, for example by asking the patient's opinion or asking for their help with something, it lets them feel they can still contribute.
- The caregiver taking breaks too. If the person accompanying the patient gives up their own sleep, meals and social life entirely, everyone wears out in the long run. The article on caregiver burnout may offer guidance here.
When Should You Seek Professional Support?
Sadness, anger and anxiety are expected feelings while adjusting to dialysis. However, the following situations suggest that support from a mental health professional may be helpful:
- Weeks of lack of motivation, withdrawal and being unable to enjoy anything
- A tendency to miss sessions or to keep ignoring restrictions
- Marked sleep problems, intense anxiety or panic before sessions
- Thoughts such as "I'm a burden on everyone, it would be better if I weren't here"
- The caregiver crying constantly, having outbursts of anger or showing signs of burnout
Depressive symptoms can be common in chronic illness, and they can be treated. If symptoms are marked, it is important to talk to your treatment team and ask for an assessment by a psychiatrist. If the patient or a relative voices thoughts of ending their life, says things like "I want to stop going to sessions and put an end to everything", or expresses a wish to harm themselves, do not carry this alone; in an emergency, call 112 (emergency services) or go to the nearest emergency department. Any thoughts about whether or not to continue treatment must also be discussed with the doctor.
How Is Dialysis Patient Psychology Addressed in Therapy?
Psychological support does not replace dialysis; but it can help make a life tied to a machine more liveable. Some dialysis centres and hospitals have psychosocial support units; asking the treatment team about this option is a good place to start.
Within cognitive behavioural therapy (CBT), commonly addressed topics include: noticing automatic thoughts such as "I'm no use any more" and developing a more balanced view, replanning meaningful activities within the restrictions, building skills for coping with pre-session anxiety, and setting realistic expectations that suit tired days. Making room for feelings of loss and grief is also an important part of the process.
In sessions with the family, communication, role changes, guilt and setting boundaries are explored. With child and adolescent patients, play and age-appropriate interviewing techniques are used. Where depressive symptoms are prominent, work in the area of depression and mood may offer direction. For patients who find it hard to leave home because of session days, sessions can also continue online.
Frequently Asked Questions
How long does it take someone starting dialysis to adjust?
The adjustment period varies from person to person; it would not be right to give a fixed timeframe. Some patients establish a new routine within a few months, while for others the process may take longer. What matters is that they are not left alone during the periods when they struggle.
A dialysis patient is constantly irritable; is this normal?
Fatigue, restrictions and loss of control can increase irritability. It helps to meet the anger without taking it personally and to talk at a calm moment. If the irritability is very intense, or if it may be linked to a physical cause, the treatment team should be consulted.
What should I keep in mind when visiting a dialysis patient?
The day after a session is usually the most tiring; it is better to arrange your visit for a day when their energy is higher. Keeping the visit short, not insistently offering food or drink, and not building the conversation only around the illness make the visit a comfort.
How should I tell children that their mother or father is going on dialysis?
A short, honest explanation suited to their age is enough. Saying "Dad's kidneys aren't working well, so a machine at the hospital helps him a few days a week" and being open to their questions reduces the fear that comes from uncertainty.
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Eda Erkan Alapala
Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.
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