GAtherton

How Much Do I Need to Know About My Aspergillosis?

Some people want to understand every detail of their aspergillosis. Others would rather know the essentials and leave the medical detail to their healthcare team. Both approaches can be perfectly reasonable — and what feels right for you may change over time.

During one of our Thursday online support meetings, a simple question led to a surprisingly thoughtful discussion:

How much does someone with aspergillosis actually need to know about their illness?

Some people in the group described wanting to understand as much as possible. Knowing what their scans show, what blood tests mean, how treatments work and what the latest research says can make them feel more involved and more in control.

But another perspective was equally important: sometimes knowing more can mean having more things to worry about.

That raises a question relevant not only to aspergillosis, but to anyone living with a long-term health condition.

There is no “correct” amount to know

People differ greatly in the amount of medical information they want.

Health psychologists have long recognised different responses to threatening health information. Some people naturally seek information when they are worried. They want details, explanations and answers. Others prefer to limit the amount of information they receive and concentrate on what they need to do next.

Research has sometimes described these tendencies as “monitoring” and “blunting”. Studies suggest that people may cope better when the amount and style of information they receive is closer to what they actually want, rather than assuming that everyone should receive — or want — the same level of detail.

You can read more about this research in studies of monitoring, coping style and health information.

There is therefore nothing unusual about one person wanting to read research papers about aspergillosis while another says:

“I trust my specialist. Just tell me what I need to know.”

Your information needs can change

These preferences are not necessarily fixed.

Someone newly diagnosed with aspergillosis may initially want to know everything they possibly can. Searching for information can help make an unfamiliar diagnosis feel less mysterious and restore some sense of control.

Another person may respond to the same diagnosis very differently:

“I can’t take all this in at the moment.”

They may want only the essentials.

Months later, those positions may reverse.

Someone who initially read everything may reach a point where they understand their condition well enough and no longer want aspergillosis occupying so much of their life. Someone who initially avoided information may gradually become more interested as they adjust to the diagnosis.

A change in health can alter things again. A new symptom, CT scan, treatment, hospital admission or change in diagnosis may suddenly generate new questions.

A large review of longitudinal research found that health-information seeking may increase, decrease or remain stable over time, and that people’s reasons for seeking or avoiding information can change with circumstances. Read the review on changing health-information behaviour.

So there may not be a simple journey from shock → learning → acceptance.

Real life is usually less tidy.

You need enough information to be safe

Saying that you can choose how much you want to know does not mean that important medical information should be avoided.

Everyone needs enough information to:

• take medicines safely and understand important instructions;
• know about significant side effects or interactions they have been asked to watch for;
• recognise important deterioration or warning symptoms;
• know when and how to seek medical help;
• understand the important choices being made about their treatment;
• know how and when their condition is being monitored.

Your healthcare team can help you identify these essentials.

Beyond that safety minimum, however, there is an enormous difference between what you need to know and everything that it is possible to know.

You are not required to become an expert in your disease.

And it is perfectly reasonable to want to become an expert

The opposite message matters just as much.

Some patients genuinely enjoy understanding their condition in considerable depth.

They may want to understand their CT reports, Aspergillus IgG or IgE results, lung function, antifungal drug monitoring, microbiology, immunology and emerging treatments.

For some people, understanding these things reduces uncertainty. It allows them to ask better questions and participate more confidently in decisions about their care.

There is no reason to discourage that curiosity.

Reliable patient information should therefore cater for different levels of interest. Some people need a straightforward explanation; others want to follow links into increasingly detailed material.

That is one reason Aspergillosis.org contains both introductory patient information and more detailed resources for people who want to explore further.

You should be able to decide how deep you want to go.

When information starts producing anxiety

There is an important warning, however.

More information is not automatically better information.

Research has found an association between health anxiety and repeated online health-information searching. That does not prove that searching causes anxiety — anxious people may understandably search more — but it demonstrates that information seeking does not always lead to reassurance. Read the systematic review and meta-analysis.

Most of us recognise the experience.

You search for an answer to one question.

That answer raises another question.

You search again.

Eventually you encounter an uncommon complication, frightening prognosis or dramatic personal story.

An hour later, instead of understanding your original problem better, you are considerably more frightened.

At that point, the search has stopped achieving its purpose.

Information should ideally help you understand, decide, cope or act.

If it is repeatedly making you more frightened without helping you do any of those things, it may be worth changing how you are looking for information.

That might mean stopping for the day, using one reliable source rather than searching widely, writing down a question for your healthcare team, or talking to someone who can put what you have read into context.

It is OK to stop reading

This deserves saying explicitly.

You have permission to stop.

You don’t have to read every article about your condition.

You don’t have to investigate every possible complication.

You don’t have to follow every new piece of research.

You don’t have to listen to a discussion that is making you anxious.

And you don’t have to Google every new sensation or symptom.

Taking a break from information is not the same as ignoring your health.

Medical-information avoidance is actually quite common. A recent large systematic review found that people may avoid health information for many reasons, including feeling overwhelmed. Read the systematic review on medical-information avoidance.

The important distinction is between controlling the amount of information you consume and avoiding information that you need to stay safe or make an important decision.

You can say:

“I don’t want to know all the possibilities. Tell me what I need to know now.”

Other people’s stories can help — but they are not your prognosis

People living with a rare condition often learn things from one another that are difficult to find elsewhere.

Another patient may understand what fatigue feels like, how difficult a particular side effect can be, what it is like waiting for scan results or how aspergillosis affects family life in ways that a medical textbook cannot describe.

That lived experience is enormously valuable.

But there is an important limitation:

Someone else’s aspergillosis story is their story, not a prediction of your future.

Aspergillosis covers several different diseases. People differ in their underlying lung conditions, immune systems, age, other illnesses, treatments and severity of disease.

People who participate frequently in patient communities may also not represent everybody living with the condition. Someone experiencing a difficult period may understandably have more reason to ask questions and seek support than someone whose condition has been stable for years.

Reading several difficult experiences can therefore create the impression that those experiences are typical or inevitable.

They may not be.

We explore this in more detail in Your Aspergillosis Story Is Not Someone Else’s Future.

Support groups can help — and sometimes overwhelm

Patient groups can provide something that medical appointments cannot easily provide: access to people who know what living with the condition is actually like.

Research across chronic illnesses suggests that peer communities can provide information, social connection, practical knowledge and help with adjustment and self-management.

However, reviews of peer support also recognise possible difficulties. Hearing repeatedly about other people’s severe symptoms, treatment failures or distress can sometimes increase anxiety, particularly for someone who is newly diagnosed or already worried.

The answer is not that support groups are inherently good or bad.

It is that different people need different things from them.

Some people enjoy joining every discussion.

Some attend occasionally when a particular subject interests them.

Some prefer simply to listen.

Some would rather read a summary afterwards.

Some use websites but have no interest in patient groups at all.

All are legitimate ways of engaging.

You don’t have to speak to benefit from listening

This is particularly important for people considering an online support meeting for the first time.

Joining a “support group” can sound like a significant commitment. You may imagine being expected to introduce yourself, describe your illness or discuss personal problems with strangers.

It doesn’t have to work that way.

In our Thursday Sessions, for example, people are welcome simply to listen.

You can hear what other people ask, learn from their experiences and decide for yourself whether the discussion is useful. There is no requirement to speak or turn your camera on.

Later you might ask a question.

Or you might never speak at all.

Both are fine.

Some people also prefer recorded talks, written articles or reading other people’s discussions in their own time.

Learning doesn’t require participation.

You can also explore other ways to connect through our NAC Communities Hub.

Choose how you want to receive information

It can help to think not only about how much information you want, but also how you prefer to receive it.

You might prefer:

A quick answer
“Just tell me the important thing I need to know.”

A patient-friendly explanation
“Explain what is happening without too much technical detail.”

A detailed explanation
“I want to understand why this happens and what the evidence says.”

A conversation
“I’d rather ask questions than read a long article.”

Other people’s experiences
“I’d like to hear from people who have lived through this.”

Time
“I don’t want to deal with this today. I’ll come back to it when I’m ready.”

These preferences can coexist.

You might want considerable detail about a treatment decision but have no desire whatsoever to read about long-term complications.

That is your choice.

Tell healthcare professionals what works for you

Doctors and nurses cannot always know how much information someone wants.

It is reasonable to tell them.

You could say:

“I’d like the main points first, please.”

or:

“I like detail — could you explain what the scan actually shows?”

You can also change your mind.

If a consultation becomes overwhelming, it is perfectly reasonable to say:

“That’s enough for me to take in today.”

Equally, if you leave an appointment feeling that you haven’t understood something important, you can ask for another explanation.

Good communication is not about giving every patient the maximum possible amount of information. It is about helping each person understand what they need and want to understand.

Ask yourself: is this helping me?

When deciding whether to keep reading, searching or listening, one simple question can be useful:

Is this helping me?

Perhaps you now understand your condition better.

Perhaps you have found a question you want to ask your doctor.

Perhaps another patient’s experience has made you feel less alone.

Perhaps you have discovered something practical that makes everyday life easier.

Those are useful outcomes.

But perhaps you have spent two hours moving from one frightening possibility to another and now feel substantially more anxious without having learned anything that changes what you should do.

That is useful information too — information about when to stop.

Find your own level

Living with a chronic illness does not mean that your illness has to become your principal interest.

For some people, understanding aspergillosis becomes fascinating and empowering.

For others, the ideal relationship with their condition is:

“I know what I need to know, I take my treatment, I attend my appointments — and then I get on with my life.”

Neither person is doing chronic illness “better”.

And you may be one of those people at one stage of your illness and the other at another stage.

The aim is not maximum knowledge.

It is enough useful knowledge for you.

If you would like to learn with other people

Our Thursday Sessions are informal online discussions for people affected by aspergillosis, including patients, carers, family members and supporters.

People talk about living with aspergillosis, treatments, symptoms, research and the everyday problems that do not always fit neatly into a medical appointment.

You are welcome to ask questions and join the discussion — but you are equally welcome simply to listen.

For some people that will be exactly the kind of support they want.

For others, reading information privately will suit them better.

The important thing is that reliable information and support are available when you want them — and that you remain in control of how much of either you use.

Find support, meetings and community resources →

The main message

There is no correct amount of information that everyone with aspergillosis should want.

Learn what you need to stay safe.

After that, read as much as helps you. Listen as much as helps you. Ask as many questions as help you.

And when more information is producing anxiety rather than understanding, it is reasonable to stop and come back another time.

Your information needs belong to you — and they are allowed to change.

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Further reading

• Monitoring and blunting: different preferences for health information
• How health-information seeking changes over time
• Health anxiety and online health-information seeking: systematic review and meta-analysis
• Medical-information avoidance: systematic review and meta-analysis
• Your Aspergillosis Story Is Not Someone Else’s Future
• NAC Communities Hub

This article provides general information and does not replace individual medical advice. If you are unsure about your symptoms, treatment or medicines, please speak to your healthcare team.

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by GAtherton