Learning to Live with Chronic Illness: Is It Really Like Grieving?

“How do you accept having a chronic illness? Is it a grieving process?”

It is one of the most thoughtful questions anyone living with a long-term health condition can ask.

Whether you have aspergillosis, bronchiectasis, severe asthma, COPD or another chronic illness, many people describe life as having two chapters: before illness and after illness.

Most of us grow up assuming our health will simply be there in the background. We make plans, book holidays, think about retirement, imagine spending time with grandchildren, travelling or enjoying hobbies. We rarely question whether our bodies will allow us to do these things.

Then, sometimes quite suddenly, life changes.

Perhaps the diagnosis follows weeks of investigations. Perhaps it comes after years of unexplained symptoms, repeated infections or unsuccessful treatments. Whatever the route, many people describe the feeling that the future they expected has quietly disappeared.

The physical symptoms may be obvious.

The emotional changes are often much harder to see.

That is why so many people describe living with chronic illness as a form of grief.

Grieving for the life you expected

When we hear the word grief, we usually think about losing someone we love.

However, grief can follow many different kinds of loss. A chronic illness may bring several losses, not necessarily all at once, but gradually over time.

You may grieve:

• the health you once took for granted
• your confidence in your body
• your independence or spontaneity
• work or career opportunities
• financial security
• hobbies and activities that have become more difficult
• changes in relationships or family roles
• the future you had imagined.

Perhaps you can no longer walk as far as you once did. Perhaps you worry about booking a holiday because you do not know how you will feel when the time comes. Perhaps you miss being the person everyone relied upon.

You may also miss the freedom of doing something without first considering your symptoms, medication, energy levels or access to healthcare.

These are genuine losses, even when nobody else can see them.

It is therefore entirely understandable that they may be accompanied by sadness, frustration, anger or fear.

The hidden or “side” griefs

One patient described something that many people immediately recognised: the “side griefs”.

These are the numerous, seemingly small losses that accompany chronic illness. Individually, they may not appear life-changing. Together, they can gradually reshape everyday life.

Perhaps you stop gardening because your breathing or energy will not allow it.

Perhaps you can no longer play with your grandchildren in the same way.

Perhaps you avoid crowded places because you are concerned about infection.

Perhaps you have become the person who always has to ask, “How far is the walk?” or “Will there be somewhere to sit?”

Perhaps an invitation that once brought excitement now brings several calculations: How will I travel? Will I have enough energy? What happens if I become unwell? Can I cancel at short notice?

None of these changes may appear dramatic to other people. Together, however, they can change how you see yourself and the life you live.

“Shouldn’t I be over this by now?”

Many people feel guilty about continuing to struggle emotionally after their diagnosis.

Friends and relatives may say:

“At least it is being treated.”

“You look well.”

“Try to stay positive.”

These comments are usually intended to be reassuring. However, living with a chronic illness is not simply about receiving treatment and then carrying on as before. It frequently requires further practical and emotional adjustment.

Some days that adjustment feels manageable. Other days it feels exhausting.

There is no correct timetable for coming to terms with a life-changing diagnosis.

Is there really a grieving process?

You may have heard of the “five stages of grief”: denial, anger, bargaining, depression and acceptance.

These ideas have helped many people put words around difficult emotions, but real life is rarely so orderly. People do not necessarily move neatly from one stage to the next, and not everyone experiences all of them.

You might feel angry when you are first diagnosed and then optimistic when treatment begins. You may feel settled for several months, only to become frightened again before a scan or clinic appointment.

A flare-up, hospital admission or change in treatment may bring back feelings you thought you had already dealt with.

This does not mean that you are going backwards.

It means you are responding to a changing situation.

Research into psychological adjustment to chronic disease suggests that people differ greatly in how they respond and that adjustment can vary across the course of an illness. There is no single emotional pathway that everyone must follow.

The emotional rollercoaster

Many people imagine that accepting a diagnosis is something that happens once.

Patients often describe something very different.

Living with chronic illness can feel like an emotional rollercoaster.

Good clinic appointments may be followed by disappointing ones.

One blood test brings relief. The next raises new questions.

A scan may show improvement, only for a new symptom to appear.

A treatment begins to work, but later causes side effects or needs to be changed.

One day you almost forget that you are ill. The next day, getting dressed may feel like hard work.

Hope and disappointment.

Confidence and uncertainty.

Good days and bad days.

This continual movement can be exhausting. Just as you begin to feel that life is becoming predictable again, something changes.

Many people say that they are emotionally tired as well as physically tired.

Good days and bad days

Good and bad days can affect how you understand your illness.

On a good day, you may wonder whether you have been too cautious or whether things are finally returning to normal.

On a bad day, you may fear that your illness is getting worse or that the improvement was never real.

Both reactions are understandable, but one day rarely tells the whole story.

Over time, many people learn to look for patterns over weeks or months rather than judging their health by one particularly good or difficult day.

A bad day does not necessarily mean that your condition is deteriorating.

A good day does not mean that the illness has disappeared.

One of the hardest skills is learning to enjoy a good day without spending it worrying about the next bad one. Another is remembering during a difficult day that how you feel today may not be how you feel tomorrow.

You do not adapt once

Perhaps the biggest misconception about chronic illness is that acceptance is a single event.

In reality, most people do not adapt once.

They adapt hundreds of times.

You adapt to the diagnosis.

Then to the first treatment.

Then to side effects.

Then to improvement.

Then to a setback.

You adapt to hospital appointments, new symptoms, reassuring results and worrying results.

You adapt to holidays that have to be cancelled and holidays that go better than expected.

You adapt to asking for help when you were previously independent and to saying no when you would once have said yes.

Every change asks you to adjust again.

This does not mean that you have failed to accept your illness. It reflects the reality of living with a condition that can fluctuate and change over time.

Acceptance is dynamic

Perhaps we should stop thinking of acceptance as something we either achieve or fail to achieve.

Acceptance is dynamic.

It changes as your illness changes, as treatments change and as life itself changes around you.

Every new situation may require another adjustment.

Acceptance is not a finish line. It is an ongoing process of recognising where you are now, adjusting your expectations and protecting the things that remain important to you.

Acceptance does not mean giving up.

It does not mean liking what has happened, pretending everything is fine or abandoning hope for better treatment.

It means recognising the reality of today without spending all your energy fighting the fact that the illness exists.

Many people describe a gradual shift. Instead of repeatedly asking:

“Why has this happened to me?”

they begin to ask:

“Given where I am today, how can I live as well as possible?”

The first question is entirely understandable, but it may never have a satisfying answer. The second may create choices, even when those choices are limited.

Not every day has to be positive

People living with chronic illness are often encouraged to “stay positive”.

The intention is usually kind. Sometimes, however, it can feel like another burden.

The reality is that some days are simply difficult.

You do not have to find a positive lesson in every setback.

You do not have to feel grateful every day.

You do not have to pretend that losing something important does not hurt.

Sometimes the healthiest response is simply to acknowledge:

“Today is hard.”

Tomorrow may be different.

When illness affects the whole family

Chronic illness rarely affects only the person who has been diagnosed.

Partners, children, relatives, friends and carers may also live with uncertainty, disrupted plans, additional responsibilities and concerns about the future.

A partner may not know whether to encourage activity or suggest rest. A relative may struggle to understand why someone can manage an outing one day but has to cancel plans the next. A carer may be carrying practical responsibilities while also trying to manage their own emotions.

Because symptoms fluctuate, family members may sometimes misread what is happening.

On a good day, they may assume that the illness is improving permanently. On a bad day, they may wonder why everything has suddenly changed again.

The person who is ill may then feel disbelieved, pressured or guilty. The family member may feel rejected, confused or unappreciated.

Nobody necessarily intends to hurt anyone, but frustration on both sides can make an already difficult situation feel worse.

Patients may feel guilty about cancelling plans, needing help or placing additional demands on those around them. Carers may feel guilty for becoming tired, impatient or resentful.

These feelings do not mean that anyone cares less. They usually mean that everyone is trying to adapt to a situation they did not choose.

Open communication can help. It may be useful to explain that symptoms fluctuate, that a good day does not mean the illness has disappeared, and that a cancelled plan is not a rejection.

It is equally important for carers and relatives to be honest about their own limits and to have time, support and interests that do not revolve entirely around illness.

Sometimes the most useful conversation is not about solving the problem. It is simply acknowledging:

“This is difficult for both of us, and neither of us is to blame.”

Both the person living with illness and the people supporting them may have to adapt hundreds of times. Doing that together requires patience, honesty and permission for everyone involved to have difficult days.

Families and friends supporting someone with chronic pulmonary aspergillosis may also find our guide to CPA for family and friends helpful.

Living with uncertainty

One of the hardest parts of chronic illness is often uncertainty.

You may not know how well a treatment will work, whether symptoms will improve or how much energy you will have tomorrow.

This unpredictability can make planning difficult. It may also make you feel that you cannot entirely trust your body.

Some people respond by constantly watching for symptoms or imagining everything that might go wrong. This is understandable, particularly after frightening experiences, but remaining permanently on alert can itself become exhausting.

Acceptance does not remove uncertainty. It can, however, help you concentrate more of your attention on what is happening today rather than trying to solve every possible version of the future.

The NHS guide to coping with change and uncertainty offers practical suggestions for focusing on the short term, recognising what is working and finding a new rhythm.

What helps people adapt?

There is no single method that works for everybody. However, research and the experiences of people living with chronic illness suggest that several things can help.

Understanding your condition

Reliable information can reduce some of the fear created by uncertainty. Understanding your condition, treatment and warning signs can help you feel more prepared and involved in decisions about your care.

At the same time, it is possible to become overwhelmed by searching for information. It may help to use a small number of trusted sources and discuss important questions with your healthcare team.

Managing energy rather than fighting it

Fatigue is not simply ordinary tiredness. It can affect concentration, confidence, relationships and emotional wellbeing as well as physical activity.

Learning to pace activity, prioritise important tasks and allow time for recovery is not laziness or surrender. It is a practical response to limited energy.

Our guide to managing fatigue and energy in aspergillosis and allergic fungal lung disease explains pacing, the “boom-and-bust” cycle and ways to use limited energy more effectively.

Talking honestly

Family and friends may want to help but may not understand what you need. They may see you on a relatively good day and assume that your illness has improved.

It can help to explain that symptoms fluctuate and that cancelling a plan does not mean you no longer care about the people involved.

You do not have to tell everyone everything. However, being honest with a few trusted people can reduce the effort involved in constantly pretending to be well.

Connecting with people who understand

Support from other patients can provide something that even loving relatives and skilled healthcare professionals may not always be able to offer: recognition from someone who has experienced something similar.

People may exchange practical ideas, but sometimes the most important benefit is simply hearing:

“I understand. I have felt that too.”

Our aspergillosis support groups and meetings provide welcoming online spaces for patients, carers and supporters. You can also explore the wider aspergillosis community and support hub.

Making room for difficult emotions

Trying to suppress every frightening, angry or unhappy thought can require enormous effort.

Approaches such as mindfulness and Acceptance and Commitment Therapy, usually shortened to ACT, do not ask people to pretend that difficult feelings are unimportant. Instead, they aim to help people make room for those feelings while continuing to take actions connected with what matters to them.

The aim is not to eliminate all distress. It is to reduce the extent to which distress controls every decision.

Our article on managing the stress of living with chronic disease explores grounding, mindfulness, breathwork and other ways of responding to prolonged stress.

Setting goals that belong to your life now

Goals can restore a sense of direction and control, but they may need to change.

A goal does not have to be dramatic. It might be:

• taking a short walk
• meeting a friend
• returning to a hobby in a modified form
• attending an important family occasion
• preparing one meal
• asking for help before reaching exhaustion.

Changing a goal is not necessarily failure. Sometimes it is how we preserve the part of the goal that matters most.

You are more than your diagnosis

One danger of chronic illness is that it can gradually take over your identity.

Medical appointments, symptoms, prescriptions and test results may begin to dominate everyday conversation. You may find yourself thinking about your life mainly in terms of what your body can no longer do.

But you are not simply “an aspergillosis patient”.

You may also be a parent, partner, grandparent, friend, musician, gardener, engineer, teacher, artist or volunteer.

Illness may change how you fulfil those roles. It does not erase them.

It can help to ask:

“What matters to me, and is there another way I can still be part of it?”

You may no longer be able to host a large family gathering, but perhaps you can spend quieter time with one or two people. You may no longer manage a full day in the garden, but you may still be able to grow something in a container near the house.

Adaptation is not always about doing less. Often, it is about protecting what matters most.

Where people find strength

Although the journey is different for everyone, many people eventually discover something that helps them continue moving forward.

For some, it is family or friendship.

For others, it is faith.

Some find strength in nature, creativity, humour, community, personal values or helping other people.

One patient shared these words with us:

“I have to constantly remind myself that God is sovereign and in all things He is working for good to bring me to a greater understanding of who He is.”

Not everyone shares the same beliefs, but many people describe finding comfort in something that feels larger than the illness itself. That source of strength is deeply personal, and there is no single right answer.

Hope changes too

When people are first diagnosed, hope often means hoping for a cure or a complete return to their previous life.

Over time, hope may take on different forms.

Hope may mean:

• having more good days than bad ones
• finding a treatment with fewer side effects
• walking a little further than last month
• reducing the need for steroid treatment
• taking a holiday
• seeing grandchildren grow up
• feeling useful and connected
• discovering that life still contains pleasure and meaning.

This is not necessarily a smaller or weaker form of hope.

It is hope that has adapted to reality while continuing to look forward.

When additional help may be needed

Sadness, frustration, anger and fear are understandable responses to chronic illness. However, sometimes emotional distress becomes persistent or begins to affect every part of life.

Consider speaking to your GP or healthcare team if you are:

• feeling low or hopeless most of the time
• experiencing frequent panic or overwhelming anxiety
• withdrawing from everyone around you
• unable to sleep because of worry
• losing interest in nearly everything you previously valued
• finding that distress is making it difficult to manage medication, food or basic daily care.

Seeking psychological support does not mean that your physical symptoms are “all in your head”. Chronic physical illness places genuine demands on emotional wellbeing, and receiving help with those demands is part of caring for the whole person.

The NHS has practical guidance on looking after your mental health when living with physical illness. Its Every Mind Matters service also provides advice about stress, anxiety, low mood and sleep.

You are not alone

If you are finding it difficult to accept a chronic illness, you are in very good company.

Almost everyone living with a long-term condition experiences periods of sadness, frustration, fear or grief.

These feelings do not mean you are weak.

They do not mean you are failing.

They mean you are adapting to one of life’s greatest challenges.

Not once, but over and over again.

You may adapt hundreds of times during your journey:

To good news.

To bad news.

To better days.

To worse days.

To new medication.

To unexpected side effects.

To a reassuring scan.

To a worrying blood result.

To holidays that happen.

To holidays that have to be cancelled.

To the loss of something you valued.

To the discovery of something new that brings you joy.

Acceptance is not a finish line.

It is a lifelong process of adapting to change while holding on to the things that matter most.

Life may not be the one you planned.

But it can still be a life filled with love, purpose, hope and moments of genuine happiness.

Further support

Living with chronic illness can sometimes feel overwhelming, but you do not have to face it alone.

You may find it helpful to talk to:

• your GP
• your respiratory or specialist team
• a trusted friend or relative
• a counsellor, psychologist or NHS Talking Therapies service
• other people living with a similar condition.

For aspergillosis-specific support, visit our support groups and meetings page.

References and further reading

• Stanton AL, Revenson TA, Tennen H. Health psychology: psychological adjustment to chronic disease. Annual Review of Psychology. 2007;58:565–592. View on PubMed.
• Bonanno GA, Westphal M, Mancini AD. Resilience to loss and potential trauma. Annual Review of Clinical Psychology. 2011;7:511–535. View on PubMed.
• Graham CD, Gouick J, Krahé C, Gillanders D. A systematic review of the use of Acceptance and Commitment Therapy in chronic disease and long-term conditions. Clinical Psychology Review. 2016;46:46–58. View on PubMed.
• Herbert MS, Dochat C, Wooldridge JS, et al. Technology-supported Acceptance and Commitment Therapy for chronic health conditions: a systematic review and meta-analysis. Behaviour Research and Therapy. 2022;148:103995. View on PubMed.

This article provides general information and emotional support. It is not a substitute for individual medical or psychological advice. Please speak to your GP, specialist team or another qualified healthcare professional about your own circumstances.

by GAtherton