Emotional support
Feeling like a burden
It is one of the most common things patients feel and one of the least often said out loud. Being driven everywhere, cooked for and lifted out of every decision produces it almost reliably, however loving the household. Much of it comes from having every role removed at once, and that can be addressed.
The short answer
Is it normal to feel like a burden on your family?
It is one of the most common things patients feel and one of the least often said out loud. Being driven everywhere, cooked for, watched over, lifted out of every decision and discussed in the next room produces it almost reliably, however loving the household is. It is not ingratitude.
It also has a practical cause that can be addressed. Much of the feeling comes from having every role removed at once, not from the illness itself. A patient who still makes tea, still decides what is cooked, still holds the accounts and is still asked their opinion feels very differently from one who is only looked after.
Ask to keep the things you can still do
Say which tasks you want back. Families take everything away out of kindness and are usually glad to be told which parts to return.
Be present for the conversations about you
Being discussed in another room and then informed of the outcome is one of the sharpest parts of this. Ask to be in the room, including at appointments.
Say it to one person
The relative doing the most is usually the one who most needs to hear that you feel this way, and almost always says something you did not expect.
If you feel the family would be better off without you, tell your team today. That feeling needs help, not endurance.Where it comes from
What actually produces the feeling
- Every role removed at once
- Earning, cooking, driving, deciding, looking after grandchildren. All taken away in the same week, and each one taken with affection. The sum of it is a person with nothing left to do.
- The money
- Knowing what is being spent, and on whom, and what the family is going without. This is the heaviest part for many patients and the one they discuss least.
- Watching the attendant not sleep
- Seeing a spouse or a child exhausted, losing wages, sleeping in hospital corridors. Patients carry that daily and usually say nothing about it.
- Being discussed rather than consulted
- Conversations in the next room, decisions arriving already made, doctors addressing the son instead of the patient. Small individually and substantial in aggregate.
- Needing help with the body
- Being bathed, helped to the toilet, dressed. For many people the hardest part of all, and worth saying to the team, because some of it can be arranged differently.
- Nobody saying the obvious thing
- Households talk about counts, cycles and food, and never say that they want the person there. Left unsaid, patients assume the opposite.
Not sure whether this applies to you?
Ask an oncologistPractical
What helps, on both sides
Mostly about returning small amounts of control.
Name three things you keep doing
Whatever they are: the menu, the accounts, the grandchild's homework, the phone calls. Write them down and tell the household those are yours.
Ask for
- To be in the room at appointments
- To be told things directly, not through others
Spread the care across more people
A written rota with named deputies reduces both the attendant's load and the patient's sense of being one person's burden. It is easier to accept help from six people than from one.
Give the distant relatives real jobs
Insurance calls, scheme applications, paperwork, arranging lifts. People who want to help and cannot be present are an under-used resource, and using them spreads the weight.
Good remote jobs
- The documents and insurance file
- Ringing to check the cycle is going ahead
Let the attendant have scheduled time off
Written into the plan rather than hoped for. Patients feel this keenly, and knowing the attendant gets a day away genuinely reduces the guilt.
Ask for a counsellor
This is a recognised reason for psycho-oncology support, and it is available at many centres. Saying it to somebody outside the family is often easier than saying it inside.
You feel the family would be better off without you · you have thoughts of harming yourself, or of not wanting to be here · you are thinking of refusing treatment so as not to cost them anything · you have stopped eating or taking your medicines · you feel hopeless most of the day, most days · you have stopped speaking to the people closest to you. Ring your hospital number, tell a relative, or go to the nearest emergency department. This is urgent and there is help for it.
Being straight with you
What this page cannot tell you
It cannot tell you the feeling is baseless. The household really is spending money, losing sleep and giving up wages, and dismissing that as imagination helps nobody. What it can say is that being costly to people is not the same as being a burden to them, and that families asked directly almost never use that word.
It also cannot fix a household that genuinely is resentful. Some families are strained, some relationships were difficult before the diagnosis, and treatment does not improve them. If that is your situation, a counsellor and the medical social worker are better placed to help than any amount of good intention.
Do not let this decide your treatment
Patients refuse or quietly stop treatment to spare the family more often than anybody records. If that thought is in your mind, say it to your oncologist before acting on it. Nothing about that decision should be made alone at night.
Accepting help is a service to the helper
People who love somebody who is ill need something to do with it. Refusing every offer leaves them helpless as well as frightened, which is harder on them than the task would be.
Tell the attendant to look after themselves
Coming from the patient it carries weight that nobody else's advice does. Many attendants will only take a rest day if the patient insists on it.
What to do next
Name three things you will keep doing and tell the household. Ask to be in the room for appointments. Spread the care across a written rota with named deputies, give distant relatives real jobs, and ask for a counsellor. If you feel the family would be better off without you, tell somebody today.
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Commonly believed
Four things patients conclude in silence
Almost no family asked directly agrees with this, and almost every patient who thinks it keeps it private. It is also a feeling that needs help rather than endurance, so tell your team today.
That decision is made silently far more often than it is recorded. Say it out loud to your oncologist first, and ask the medical social worker what help exists before concluding what the family can bear.
People who love somebody who is ill need something to do with it. Turning down every offer leaves them helpless as well as frightened, which is harder on them than the task was.
Removing every role at once is what produces the feeling of being a burden. Ask the patient which things they want to keep, and give those back, however small they seem.
Questions we are asked
Common questions about feeling like a burden
Is it normal to feel this way?
Very common, and rarely said out loud. Having every role removed at once, watching the money go and seeing the attendant exhausted produces it almost reliably. It is not ingratitude.
What should I actually ask for?
Three tasks or decisions you keep, to be present at appointments, and to be told things directly rather than through others. Those three requests change the feeling more than reassurance does.
Should I tell my family I feel like this?
Tell one person, usually the one doing the most. They almost always say something you did not expect, and they are also the person best placed to change what is happening at home.
I am thinking of stopping treatment to spare them. Is that reasonable?
It is a decision to make with your oncologist and your family, never alone. Ask the medical social worker what help exists first, because most families find more than they expected once they ask.
How do we stop it falling on one person?
A written rota with named deputies and scheduled time off for the main attendant. Accepting help from six people is far easier than accepting it from one, for both sides.
What can distant relatives do?
Paperwork, insurance and scheme calls, arranging lifts, and ringing to confirm each cycle. Those are real jobs, they genuinely reduce the load, and people are usually pleased to be asked.
Needing help to bathe is the worst part. Can anything change?
Sometimes yes. Ask about equipment, a rail, a stool, or a different arrangement of who helps. Say plainly that this is the part you find hardest, because nobody will guess it.
Is there somebody outside the family I can talk to?
Ask for a counsellor or psycho-oncology support, available at many centres and under-used. Many patients find it easier to say this to somebody outside the household than inside.
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Patient stories
Hear it from people we have treated
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Sources
- Macmillan Cancer Support — Your feelings and cancer
- Cancer Research UK — Coping emotionally with cancer
- American Cancer Society — Emotional, Mental Health, and Mood Changes
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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