Need to know
Have you ever stayed up late at night comparing your symptoms with terrible medical conditions online? Have you felt terrified that fate has finally caught up with you when you notice a spot, rash or odd bump on your body? Do you dread getting test results from your doctor because you know it will be bad news? Of course, it’s normal to worry about health from time to time, but if you answered ‘Yes’ to any of these questions, then you might be like the other 979 million in the world who experience ‘illness anxiety disorder’ – either focused on your own health and/or the health of someone you love.
Unless properly treated, illness anxiety disorder can be chronic and disabling. The constant worries about illness, even after getting reassurance, can interfere with school, work, sleep, relationships, and lead to depression and suicidal thoughts. It can also lead to unnecessary medical tests and procedures when doctors accidentally get caught up trying to reassure patients nothing is wrong. Whether your health anxieties are currently mild or more serious, the aim of this Guide is to help you break out of this trap and regain perspective and peace of mind.
Consider a patient with illness anxiety disorder who I worked with – let’s call her Lizzy. Lizzy’s friend had recently been diagnosed with brain cancer after noticing impaired vision in one eye and breaking her finger turning into a wall. Lizzy soon began to check her own vision by covering each eye with a hand, and she realised her vision was sometimes fuzzy in one eye compared with the other. She also noticed the sensation of losing her balance when turning corners sharply. She began researching the type of cancer her friend had, hoping to understand her friend’s symptoms but also to verify she was OK herself.
Unfortunately, instead of feeling reassured, Lizzy discovered that impaired vision and dizziness were possible symptoms of brain cancer, along with headaches and losing focus, both of which had happened to her within the past few weeks. Lizzy then began to talk to others to see if they had the same symptoms and they all told her not to worry, but she could not stop worrying because how could she be sure she did not have brain cancer? She began thinking about saying goodbye to her children and partner, getting painful treatments and receiving hospice care to the point that she cried, and felt nauseous and shaky. Since the shaky feeling would not go away, she misinterpreted this as an additional sign of cancer.
Lizzy was referred to me after she had tearfully begged her doctor for a brain scan to detect brain cancer. Her doctor correctly realised she was anxious, and saw no need for any tests because he understood her symptoms were either the product of anxiety or normal variations in vision and concentration.
The problem of intolerance of uncertainty
If, like Lizzy, you have extreme anxieties about being or becoming ill, it might surprise you to learn that your problem is not your health. It is your intolerance of uncertainty about illness and health. People who are comfortable with uncertainty about health tend to think: ‘I must be tired or stressed, so I will forget about this symptom.’ In contrast, when you have intolerance of uncertainty, your mind tries to take a better-safe-than sorry approach to the infinite set of possibilities. You get easily triggered when you notice bodily symptoms such as rashes, bumps, spots, pain, fatigue or malaise. Your symptoms can be real, but you misinterpret them as dangerous signs of serious illness. For example, you might notice a mole and then worry you might have malignant melanoma, a life-threatening cancer. I had another patient call me in tears when he feared one pupil was larger than the other – he’d been comparing his eye-pupil sizes in the mirror and become convinced he had a brain tumour in his optical nerve that had changed the pupil size of one eye.
When you have illness anxiety disorder, your mind loses its ability to be flexible and to imagine the myriad other explanations for your symptoms and, instead, becomes stuck imagining the worst. You might even say things to justify your worry, such as: ‘Well, someone has to worry about my health,’ or ‘It’s a parent’s job to worry about their child’s health.’
Intolerance of uncertainty makes you falsely believe you are playing it safe, and that your worry and reassurance-seeking is a way of acting responsibly about your health. You might find it difficult to imagine that people without illness anxiety disorder do not worry or do reassurance-seeking when they are faced with medical symptoms or a diagnosis of serious illness. However, research shows that optimism – the ability to imagine a good outcome even while not knowing how to get there – is a strong correlate of good mental health.
It’s possible to live well with an illness
You might be thinking – but many people really do have serious illnesses, their worries are not irrational! However, contrary to popular belief, most people with serious or terminal illness do not suffer from illness anxiety disorder, and they are able to enjoy life and live well, despite the knowledge of a future that contains illness.
What usually happens when people receive a serious medical diagnosis is that they will have an initial period of adjustment followed by a desire to live well in the present moment and to enjoy all good moments that can be had. When I led a support group for terminally ill patients, they felt frustrated with the pity of others and very much wanted to focus on having fun, enjoying moments of feeling well. They told me: ‘We want to live as much as we can because we know that we are going to die!’ I realised they did not consider their lives to be tragic or unlucky compared with others’ lives. Instead, they viewed worry about the future as a waste of time because they knew theirs was shorter and more uncertain.
People with a serious illness or terminal illness do sometimes experience illness anxiety disorder – but, in this case, their anxieties go beyond the feelings of disappointment, sadness or grief that typically accompany this type of medical diagnosis. They tend to focus upon the tragedy of their circumstances and worry repeatedly about the worst-case scenario, instead of accepting their diagnosis, grieving it and refocusing on making their current circumstances productive and meaningful.
Desiring a guarantee of good health is understandable, but it’s something that no human can ever have. The best way to overcome your health anxiety is to address the problem of intolerance of uncertainty, and break the cycle that creates avoidance, reassurance-seeking and checking symptoms. This will take some courage, support and a willingness to feel worried for the sake of learning to live free of fear, longer term. In this Guide I’ll give you a series of graduated steps to begin your journey toward peace of mind about your health.
What to do
Understand what maintains your illness anxiety
Checking your body, or someone else’s, researching symptoms, talking about symptoms for the sake of comparison, avoiding hearing about serious illness or death, or talking with your medical team just to be sure you are OK – all these activities are understandable attempts to reduce your health anxiety, but they will likely make it worse. These are examples of behaviours that can become entrenched via ‘negative reinforcement’ – this is when a behaviour is reinforced or rewarded by the removal of something unpleasant. Reassurance-seeking and avoidance gives you a momentary escape from the worry and anxiety, but in the long run it makes it worse by convincing you that you cannot tolerate the uncertainty of not knowing your future health – yet this is an uncertainty with which we must all ultimately live.
Here’s an example: imagine you notice you’re feeling fatigued and having difficulty paying attention, and then you remember hearing that fatigue is a symptom of Lyme disease. This makes you worry: ‘What if I have Lyme disease?’ You try to get rid of your worry by looking on the internet to find proof you do not have Lyme disease. Unfortunately, fatigue is on the long list of symptoms of Lyme disease, but you have no way to determine if your fatigue is normal or due to this disease. You then feel more anxious but have no way to prove all is well. Then you feel more compelled to look at other medical websites and wonder how you can get a test for Lyme disease. Negative reinforcement becomes a vicious downward spiral into more worry and more reassurance-seeking. The constant health-checking and research and similar activities undermine your ability to dismiss the worst-case-scenario thoughts and make it difficult for you to imagine other possibilities, such as having just a minor illness or some momentary, insignificant symptoms.
Negative reinforcement is like playing a slot machine: you become convinced that one more conversation about illness or one more visit to a medical website will make you feel better, when instead it quickly leads to more anxiety and the desire to do more research or ask others more questions. Once you understand this cause-and-effect relationship, the next step is to try to reverse the cycle of negative reinforcement.
Identify the triggers that sustain your health anxiety
The best way to reverse the cycle of negative reinforcement is to identify the triggers for your worries about illness and all the ways you try to get rid of your worry and anxiety. Once you recognise the triggers that lead to reassurance-seeking and avoidance of further triggers, you can begin the process of recovery. Here are some examples of typical triggers that prompt excessive unpleasant worry:
- noticing a physical symptom on or in your body;
- hearing about someone else’s serious illness or death from serious illness;
- sudden brief pains, aches or odd sensations;
- seeing things that remind you of illness or death, such as cemeteries, hospitals or funeral homes;
- getting cancer-screening tests or other screening tests, such as mammograms, blood tests, CT scans or colonoscopies; or
- seeing a movie or reading a story about someone who gets a serious illness, or dies from a serious illness.
I suggest you jot down your own list of anxiety-provoking triggers and keep it to hand for later. Now, here in this table are some examples of the two main types of negative reinforcers you might use to bring short-term relief from the worry caused by your health anxiety triggers:
You can use a table like the one above to list out the main ways that you seek reassurance and avoid triggers – and keep this to hand for later. Once you have identified your triggers and negative reinforcers, you are ready to begin the process of exposure therapy. This is a way to teach your body and mind how to get used to triggers without accidentally giving in to the urge to seek reassurance or avoid.
Practise illness-related exposure therapy
Exposure therapy and learning to view uncertainty as normal is the most reliable way to recover from illness anxiety. Exposure therapy involves gradually reducing (and ultimately ending) your reassurance-seeking and avoidance – thereby exposing yourself to the health worries, learning to tolerate them, and letting them fade. Your long-term goal is to prove to yourself that you can handle and endure your anxiety without the quick escape of negative reinforcement. Let me introduce you to a real-life example to help you see how exposure therapy works.
This young man I worked with – let’s call him Bill – learned within the same week that his father had been diagnosed with skin cancer and that a paternal uncle had been diagnosed with colon cancer. Unfortunately, Bill’s father had a large portion of the skin on his back removed due to the spread of the cancer, even though the superficial mole that was cancerous was quite small by comparison. He also needed skin grafts to cover the affected areas, which severely frightened Bill. This triggered nightmares and constant worry about cancer growing under his skin. As a way to cope, Bill began both reassurance-seeking and avoidance.
Bill started checking his skin for signs of unusual moles and underwent multiple skin cancer screenings with different doctors to get relief from his worry. After his screening, he worried: ‘What if the doctor missed something? What if cancer is spreading since the doctor saw me?’ He checked his skin daily, took photos of any moles or marks that seemed suspicious, and sent them daily to his doctor’s office. Bill persuaded his girlfriend to check his skin, until she became frustrated and refused to check. Bill’s doctor also refused to look at any more photos. In turn, Bill avoided looking at his dad’s back because seeing it triggered worry about cancer. And he avoided going near cancer treatment locations or hospice facilities. To help Bill, I used exposure therapy, and in a moment I’ll show you how.
Decrease your reassurance-seeking
Everyone’s reassurance-seeking is different. You can refer back to the table you completed earlier to help guide your own efforts at reducing reassurance-seeking. Here are some general steps you could take (remember to tailor them to your own situation):
- Get rid of any apps or bookmarks for medical websites you frequent to make it harder to research symptoms.
- Cut back on your medical research if you cannot completely stop, by limiting it to only a short time once a day, or every other day until you feel ready to cut back more.
- Ask others to remind you to stop asking for their reassurance. Give them a kind way to respond, such as: ‘Looks like you are getting anxious about your health. I don’t want to make things worse by talking about it with you. How else can I support you?’
- Tell your medical team that you have illness anxiety, and ask for their support and help. Explain how you do indeed trust their medical knowledge but need help managing anxiety.
- Find ways to stop checking your body, such as by using a washcloth when you shower or bathe so you don’t feel every bump or rash. Cover up mirrors you use for checking, and delete any photos of symptoms you have been monitoring.
Here’s how I applied this approach with Bill. To decrease his checking, I asked him to cover up any large mirrors so he could no longer scan his entire body. I suggested that he begin using a washcloth as a barrier while bathing so his hands could no longer rove over his body to detect any lumps or bumps that might indicate cancer. He wore sunglasses when he was getting dressed to avoid seeing his skin clearly. He also agreed to restrict his internet searches to only once a day for 15 minutes, and then gradually decreased the amount of time searching until he gave it up altogether. He deleted photos of his skin from his phone, and asked his girlfriend to help remind him when he accidentally began searching for signs of change.
Decrease your avoidance of anxiety-provoking triggers
Again, refer to the list and table you completed earlier, to identify the triggers that are especially relevant to you and your avoidant behaviours. You might find starting with less difficult triggers builds your confidence to handle the more difficult triggers. Here are some general ways to decrease your avoidance:
- Dare to stay in conversations that mention serious illness, death or hospitals. Try to listen without changing the topic or leaving.
- Practise repeatedly going near or into hospitals, cemeteries or other places that trigger your anxiety. Allow yourself to feel anxious and imagine scary thoughts while reminding yourself that this is just your scary imagination fooling your body and brain into believing danger is real. Do this until you realise you can handle it.
- Practise watching media about illness, hospitals, dying or serious illness. You can start with the sound very low or by watching on a small, smartphone screen and graduate to watching on a full-screen television with the sound at normal volume. Repeatedly watch the scariest scenes until you get used to doing it and they no longer scare you.
- Practise asking about the health of others you know have serious or life-ending illnesses.
- Schedule any medical checkups or tests you have avoided, and get a support person to help you attend. Tell your medical team about your illness anxiety and how it makes you avoid working with them.
- Practise facing your scary thoughts by writing a story about getting seriously ill and dying. Re-read this scary story repeatedly until you get used to it. You can do this with a support person if this feels too difficult to do on your own.
To decrease Bill’s avoidance, I asked him to practise driving by and looking at local cancer clinics and hospices. He did internet searches to learn about all the nearby cancer clinics and hospices so he could stop avoiding going near them. He also practised noticing his father’s back until he no longer felt worried or unable to manage the anxiety this provoked. He even invited his father to go swimming with him so he would have to see most of his father’s skin.
Finally, Bill did exposure to his worries by practising imagining the worst-case scenario until it no longer made him feel so anxious or unable to cope with his anxiety. He stated his worries aloud, starting with less-frightening thoughts and working up to the scariest, until these thoughts no longer bothered him. This process usually takes 15 to 30 minutes when you focus solely on the scariest thoughts. He repeated phrases such as: ‘No one will detect my cancer until it is too late,’ or ‘What if I have cancer and it is untreatable?’ or ‘What if I need skin grafts and they do not take because I waited too long to get diagnosed?’ or ‘What if I have to die in a hospice and no one will visit because my body is so ravaged with cancer and failed skin grafts?’
Confronting your own fearful thoughts might sound horrifying and counterintuitive because you want to stop having these thoughts. However, the power of practising exposure to your worst-case scenario thoughts is that it rapidly helps you see their absurdity and reduces their sticky quality. I know this is the opposite of what you might picture doing in response to getting triggered, but it is among the most effective ways to see through your worries and let go of them. Most of my patients end up laughing or wondering why they got so scared of their worry once they attempt worry exposure. It takes great courage to say aloud the worry that just got triggered by a headache, a character in a TV show or some recent sad news about a friend. The good news is that this courage will be handsomely rewarded by rapid relief from getting stuck in worry. I strongly encourage you to try this exercise with your less scary thoughts first, to prove to yourself that it works. Then you will have the courage to attempt the more frightening thoughts.
Reflect on what it means to be alive
Because illness anxiety is ultimately about an intolerance to uncertainty and fears about what the future may hold, I recommend that, alongside your exposure work, you also spend some time reflecting on what it means to be a living, breathing human. Remind yourself of the following points:
- No human gets a promise of good health and a long life. We all face uncertainty about what will happen to our bodies as we age and live in a world that includes illness, disability and death. This is not tragic, but rather normal for everyone, including you.
- Joy comes from living your life with a purpose that serves others, having healthy relationships and being able to notice the blessings of the moment. This is possible, even during illness or dying.
- The people who have peace of mind are those who notice the good things in the moment and who focus upon the present rather than trying to guess what no one ever gets to know – what will happen in the future. Take time each day to notice what is beautiful, good or worthy.
This was the last stage of my work with Bill. Together, we rethought what it means to be human and to inhabit a body that can get seriously ill and will someday die. We talked about how death is a normal process that everyone must experience, as opposed to a tragic event that only a few go through. We reframed worry as a waste of time because he did not want to fritter his good moments of living, given that death was indeed inevitable. Bill also realised that he would not want to worry were he to learn that he did have a serious illness, and would instead want to live as well and vigorously as possible with the time he had left. He decided that the real tragedy would be for him to spend his precious time alive in worry and therefore he wanted to learn to accept the uncertainty we all face about not knowing our future.
I recommend to all my patients and to you to consider who you want to be and what you want to do were you to have only a year to live – and then begin living this way. I know illness anxiety disorder will never make your bucket list. The easiest way to get stuck with this disorder is to believe that you could feel calm only if you had a guarantee of good health. Unfortunately, no human alive can obtain any guarantee for the future. You will have to embrace the necessary risk that all humans must take by daring to live well in the present moment, not knowing what will happen next. Remember, research shows that those who feel joy and fulfilment throughout their lives are the ones who live to serve others, who cultivate close friendships, and who take the time to notice the small blessings of the moment.
One last thing: you might wonder when you should approach a mental health professional. My advice is to seek help if you are unable to complete the exercises in this Guide and find you are stuck and unable to let go of worry, avoidance and reassurance-seeking. Unfortunately, waiting to see if your symptoms will spontaneously go away is guaranteed to keep you stuck.
Key points – How to overcome worrying about your health
- The problem of intolerance to uncertainty. Your problem is not actually your health – it’s your discomfort with not knowing what the future holds.
- It’s possible to live well with an illness. Desiring a guarantee of good health is understandable but impossible. And, in fact, most people with serious or terminal illness enjoy life and live well, despite the knowledge of a future that contains illness.
- Understand what maintains your illness anxiety. Seeking reassurance and/or avoiding reminders of illness are forms of negative reinforcement – they bring you temporary relief but fuel your worry.
- Identify the triggers that sustain your health anxiety. Recognise all the ways you seek reassurance and avoid reminders of illness – then note these for the next step.
- Practise illness-related exposure therapy. This approach will help you teach yourself that you can handle and endure your anxiety.
- Decrease your reassurance-seeking. Gradually stop doing so much illness-related research and other checks.
- Decrease your avoidance of anxiety-provoking triggers. Gradually expose yourself to illness reminders, such as watching medical TV shows and visiting hospitals.
- Reflect on what it means to be alive. Remind yourself that no human gets a promise of good health and a long life. The people who have peace of mind are those who notice the blessings of the moment.
Illness anxiety disorder is frequently misunderstood
People who have illness anxiety disorder are often misunderstood by others, including their healthcare team. Partners, parents and medical staff often misunderstand reassurance-seeking to be a lack of trust or cooperation. They incorrectly surmise that telling an anxious person not to worry is sufficient because they do not grasp the problem of intolerance of uncertainty. They do not realise that anxiety makes a person with illness anxiety believe they can live well only once they are promised a perfectly healthy lengthy life, which is impossible. They fail to see that recovery does not involve trust in someone else’s reassurance, but instead depends on learning to live well while knowing there is never any guarantee of good health.
These misunderstandings can lead to the inaccurate portrayal of illness anxiety as being due to a desire to seek attention through medical care (Munchausen’s syndrome), or a neurotic desire to avoid happiness/success, or an attempt to get out of daily responsibilities. Sometimes, medical staff use the word ‘hypochondriac’ to mean someone who fails to follow or trust medical advice. None of these are true. Simply put, illness anxiety disorder is what happens when someone accidentally tries to get rid of the existential uncertainty of living in a vulnerable human body that must someday die by focusing upon the worst-case scenario just to be on the safe side and not be caught off guard.
How to deal with illness anxiety disorder without neglecting your own health or someone else’s
Many of my patients with illness anxiety disorder have difficulty finding a balance between good healthcare practices versus reassurance-seeking. The easiest way to do the right thing is to follow the advice of your doctor or the general advice given to the public for health screenings that fit your age and risk status. The goal is to let sound medical practice dictate when you see the doctor and get lab tests, as opposed to letting your anxiety make the decision. Also, it helps to know that people without illness anxiety disorder typically consult doctors only when they lose function, are in such severe pain they cannot do normal tasks or are unable to get out of bed for longer than a week. The one exception is when there is a public health crisis that instructs otherwise to prevent widespread disease. People without health anxiety do not stay home ‘just in case’ and they wait to get health screenings, unless their doctor suggests a different deadline. They also avoid looking up the meaning of symptoms, and wait for a doctor to diagnose before they imagine themselves getting a serious illness. They assume nothing is wrong until they are unable to do normal daily activities. They prefer to attempt self-directed healthcare to getting an outside opinion because they trust their own non-anxious judgment. They also realise that most symptoms resolve themselves within one to two weeks and believe that focusing upon worry serves no purpose other than to unnecessarily promote anxiety.
All of this might sound foolish if you have an intense fear of getting a serious illness, but aiming to live this way (using the steps in this Guide) will help prevent the accidental negative reinforcement of your worst fears and strengthen your factual observation that nothing is seriously wrong in the present.
Links & books
My book Freedom from Illness Anxiety: Understand and Overcome Obsessive Worry About Your Health or Someone Else’s and Find Peace of Mind (2022) will teach you to avoid getting stuck in worry about your health, or the health of someone you love, by using science-proven strategies to learn to enjoy the small blessings of the present moment, accept uncertainty about illness and dying, and take charge of your fear. It also helps you understand the reasons you get stuck in anxiety about illness, and makes it easy to understand and practise how to overcome this illness anxiety. The book also teaches you powerful strategies for living well.
The book The Health Anxiety Workbook: Practical Exercises to Overcome Your Health Worries (2021) by Taylor Ham has practical exercises for those who wish to focus on cognitive behavioural techniques for addressing their worries about illness and are ready to dive into taking action.
The website of the Anxiety and Depression Association of America has information about treatment, a list of international treatment providers, and access to international online support communities in both English and Spanish.
The website of Anxiety UK offers information on self-help and treatment resources for anxiety disorders, including health anxiety.
The website of Mind, the British mental health charity, offers information, online support groups and self-help support for anxiety disorders, in both English and Welsh.