Long-term or chronic illness is about more than just the physical effects. Learn about the impact it can have on mental health and five ways that you can manage this
I’m worried that this is going to be forever.
What if I just keep getting worse?
My life is over.
I feel so alone.
I don’t even know what’s wrong with me — and neither do the doctors.
Living with a long-term physical illness is about a whole lot more than the effects on your body. This isn’t to minimise the distress of issues like pain, fatigue, brain fog, a vulnerable immune system or limited mobility. Yet long-term conditions can also take their toll on many other areas of your life, including mental and emotional health, relationships, finances, goals, self-esteem and identity.
A long-term or ‘chronic’ physical illness is generally defined as any condition that lasts for longer than six months and that might potentially last indefinitely. This can include illnesses like heart disease, rheumatoid arthritis, chronic fatigue syndrome, diabetes, fibromyalgia, lupus and many more. More recently we have seen the rise of people struggling with Long Covid, where enduring symptoms can affect a person’s ability to return to work and engage in the activities that they value.
Although there are no figures for the whole of the UK, it’s estimated that 15 million people in England alone have a chronic condition. Additionally, a 2021 study by University College London found that a third of middle aged adults in the UK have at least two chronic health problems. And while everyone responds to medical issues differently, a long-term condition has the potential to overturn a person’s entire life and sense of self, resulting in anxiety, grief, trauma, anger, sadness and despair.
For instance, you might have to deal with the distress of constant uncertainty or of having to watch your condition worsen. Or if your illness is cyclical with periods of flare up and remission, then its return can feel frustrating, defeating and unfair. It can also be very hard to stay positive and balanced when you are in physical distress, as being ill can decrease your window of tolerance, making you more vulnerable to experiencing intense emotions. Also, pain is an internal alarm system designed to grab your attention, meaning it can trigger your body’s threat response, making you feel unsafe. So if you are in frequent or continuous pain, then this can have a big impact on your mental wellbeing.
In fact, there can be many daunting challenges to face beyond the physical side of long-term conditions. Here are three of them:
Unlike the way health services are organised, there aren’t really clear and neat lines separating the physical, mental and emotional parts of ourselves. Rather, when one is affected then so are the other two. So when someone develops a physical illness they may also find that they have to deal with mental and emotional health issues as well, such as:
· Depression, low mood and suicidal thoughts
· Fear, stress, anxiety and intrusive thoughts
· Anger, frustration and mood swings
· Guilt, shame and an overactive inner critic
· Trauma conditions such as PTSD or C-PTSD
· Lack of energy or enthusiasm
· Difficulty concentrating, making decisions or completing tasks
· Sleep issues, including insomnia or over sleeping
· Social withdrawal and feelings of isolation
· Low confidence and self-esteem
· Feelings of helplessness and overwhelm
· Boredom, emptiness and a lack of meaning or purpose
· Addiction (for instance, addiction to medication or the escapism of social media)
Treatment for long-term illnesses can, in some cases, be unpleasant or even traumatic. You might have dealt with endless tests, waiting lists, stressful or invasive medical procedures, surgeries or the side effects of medication, all of which can cause lingering trauma.
And if you experienced disbelief or doubt from doctors in the early stages of your illness — for instance, because you struggled to get a diagnosis — then you may still be carrying feelings of anger, betrayal, shame, self-doubt and sadness over this. In fact, if you still haven’t received a full diagnosis or explanation for your symptoms, then this problem could be ongoing, leaving you feeling invisible and unsupported. Also, if this in any way resonates with earlier life experiences, for example not being understood or believed by adults when growing up, then the emotional effects can be magnified.
You might also feel as if you have lost sight of yourself, the person who you used to be before the illness started. This can be triggered by the loss of a career or relationship role, by having new limitations placed on your social life, or by having to give up on dearly-held dreams for the future.
Your hobbies, interests and activities, your previous energy levels, the freedom and spontaneity you used to take for granted, might all now be gone. Now you might have to plan each day, week and month around your condition, making difficult choices about where to assign limited energy. Overall, it might feel that life is leaving you behind, which can result in deep feelings or grief and loss, or even a full-scale identity crisis.
What’s more, your identity as a person with a chronic condition might also be questioned by others. For instance, if your illness is ‘invisible’ or undiagnosed, then you might find that you sometimes don’t get the support or understanding that you need. At worst, you could even find people casting doubt on your condition. ‘But you don’t look ill’, they might say. This is an awful limbo to be in, where you feel disconnected from your old self yet also have people doubting your current circumstances. At times, it may even cause you to question the reality of what you are going through. But if you are suffering then your experience is real and you deserve support.
With all of the above in mind, it’s really important to find ways to gently and forgivingly manage your mental wellbeing. However, this needs to be balanced with not beating yourself up for having bad days, which are very natural as well. And while there is no simple or trite one-size-fits-all solution, here are some approaches that you can try:
How we think about and emotionally respond to a medical condition can also affect how we experience it, for instance, our levels of pain and fatigue. In other words, while illness can affect how we think and feel, the reverse can also be true. This is absolutely not the same thing as saying ‘it’s all in your mind’. Instead, it’s about paying attention to the ways in which your inner dialogue and emotional reactions can affect very real physical symptoms.
For example, having catastrophic thoughts such as ‘this pain is unbearable, I’ll never be able to get rid of it and it’ll just get worse and worse’ will likely generate feelings of panic or fear. This can evoke additional tensions and sensations in the body, ramping up your threat system even higher and probably amplifying the original pain or discomfort.
Also, if you are dealing with chronic illness, you might no longer be able to use your previous strategies for managing your self-worth or emotions. This can include striving to achieve, avoiding feeling emotions by keeping busy or being the one that others come to for help. This might leave you vulnerable to self-critical thoughts, such as ‘you’re useless’ or ‘you’re lazy’ — even though this isn’t the case.
Or are you getting into a battle with your condition and feeling frustrated? If so, then this is totally understandable, yet it might also be having an impact on the intensity of your pain. It can actually be an automatic response to fight against our pain because we’re biologically wired to try to change what we don’t like. It is only with practice that we can start to respond differently to difficulties like long-term health issues, bringing in a more mindful and kind response instead.
‘One day at a time’ is a philosophy that we can all apply to our lives, no matter what we are going through. It means focusing on today’s challenges rather than worrying about tomorrow’s. It means dealing with today’s pain or physical discomfort rather than fearing that this particular flare-up will last forever or get worse. It means feeling and processing today’s emotions as they come up, rather than worrying that you will ‘always’ be sad or angry or lonely. Being ill can cause a lot of fear, stress and panic about the future, which can feel overwhelming. Yet most of us can manage the challenges of a single 24 hours, most of the time.
You might also want to experiment with ‘pacing’, which is a way of avoiding getting into the ‘boom and bust’ cycle that might exacerbate your condition. In essence, pacing means resisting the temptation to overdo it when you feel better (boom), then going beyond your limits and depleting yourself, resulting in you 'paying for it' (bust).
Pacing is a middle ground where you aim to find consistency, set manageable goals and learn when it is best to stop (even if you feel able to do more). It’s also about getting into the habit of scheduling in rest and enjoyable activities, alongside goals and chores. After all, good periods shouldn’t just be about catching up with obligations, they should also be about reconnecting with the things you enjoy.
One day at a time sounds simple, but it is actually a lifelong practice. You will have days where you excel at it and days where you feel that you’ve ‘failed’ and lots of days where it’s something in between. But thankfully, it’s a practice that you can keep working on, one day at a time.
Chronic health conditions are often accompanied by a number of different emotions — sadness, anger, fear, resentment, confusion and sometimes shame. There can be strong emotions to work through and there can be a grief reaction to the loss of health (and all the other losses that the condition has brought). If these are bottled up, they can cause additional difficulties and even worsen physical health symptoms. It’s important to recognise that however you feel is valid and try to let yourself vent if you feel angry, cry if you feel sad and seek connection if you feel alone. Journalling might help if you’re feeling all sorts of emotions, as getting it down on paper can help create a little more distance and clarity.
But remember that you don’t have to go through everything — and manage your feelings — alone. And even if you have supportive family, friends and colleagues, you might find that they can’t always relate to your struggles. At times they might not know what to say or say the wrong thing entirely. That is why it can be really helpful to reach out to a support community, either online or in your local area. However, bear in mind that not every support group is healthy or helpful, so aim to be discerning about which ones you join. While it can sometimes be a case of trial and error, finding the right support community can be life-changing.
Chronic health conditions can shrink other aspects of life, particularly if everything’s organised around the condition. Bit by bit, valued activities and roles might slip away, along with opportunities for enjoyment and fun. Because pain and other worries about health activate our threat systems, we focus more and more on them — because evolutionarily we are wired to pay attention to danger. Shifting focus to how you want to be despite your illness and building a life around it can help. You may not have any control over the condition, but you can ask yourself: ‘What areas do I have control over? And what choices do I want to make there?’
You might not be able to change your current situation right now but you can start to change your relationship to it. And while this is much easier said than done, it is actually the basis of therapeutic approaches such as ACT and MBCT. We’ll explore these — and the benefits of therapy in general — in our next section.
There can be a lot to manage with a chronic illness, from medical care to finances to staying on top of everyday tasks and life admin. So being expected to manage your mental health and mood on top of all that can sometimes be a tall order. That is why connecting with a therapist can make a big difference. And bear in mind that if your illness restricts your mobility then you could consider online therapy via video or live chat.
In a therapeutic relationship you can express all the emotions you might be feeling, process losses and be heard, all in a confidential, non-judgemental space. A good psychotherapist or psychologist can help you to develop ways to deal with your condition, as well as the difficult emotions it brings up. They can also help you to manage intrusive thoughts, such as obsessively tracking symptoms or worrying about getting sick again. And in therapy, you won’t be under any pressure to put on a brave face.
If your illness has caused distressing situations like job loss, social isolation or a relationship breakup, then therapy can help you to work through this too. And if being unwell has brought up old wounds from the past — like feeling unsupported or abandoned by family members — then therapy is a safe way to explore this.
Therapy can also help you to explore how certain coping strategies might be unhelpful. For instance, it’s understandable to avoid dealing with your condition because you feel frightened, alone or overwhelmed, but this can cause problems if it results in missing appointments and treatments. A therapist can help you to face these fears.
As mentioned, one good therapy option might be ACT (Acceptance and Commitment Therapy). The ACT perspective is that illness, pain, grief, loss, disappointment, fear and anxiety are all common features of human life, so the goal is not to eliminate or suppress these experiences in any way, as trying to do so often only adds to your suffering. Instead, ACT encourages us to create wiggle room between you and your illness or pain so you can move in a direction that is meaningful to you. This may include intimate relationships, meaningful work and personal growth.
According to Dr Shane Ford, clinical psychologist and specialist in persistent physical health symptoms: ‘Long-term conditions can take a huge toll on your time, finances, body and emotions. Getting caught up in thoughts and feelings related to your physical health difficulties can become emotionally exhausting. It can also draw your attention away from what is meaningful in life. As your life gets narrower, the less able you are to take on life's challenges. Often, the more you try to control your physical health difficulties, the harder it can become and you can sometimes feel like giving up. Therapy can help identify or re-establish what's important to you in your life, as well as see your physical health difficulties from a more workable perspective.’
Working with an ACT therapist like Dr Ford, you would learn to adapt to the challenges of your condition by developing greater psychological flexibility, instead of suppressing unwanted emotions. This seems to make a difference as, according to a 2017 study, ACT has been shown to be effective for people dealing with physical conditions. In fact, the study even cites research that ‘symptom reduction is a by-product of re-engaging in life in meaningful ways…’.
Alternatively, you might want to consider MBCT (Mindfulness-Based Cognitive Behavioural Therapy), a specific form of mindfulness pioneered by Dr. Jon Kabat-Zinn as a way of helping people cope with chronic pain. In his book Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, he suggests that ’...it can be particularly helpful to keep in mind from moment to moment that it is not so much the stressors in our lives but how we see them and what we do with them, how we are in relationship to them, that determines how much we are at their mercy’. If this perspective interests you, then here is a handy set of free audio resources for getting started with a mindfulness meditation practice.
Compassion-focused therapy (CFT) is also increasingly being recognised as a helpful approach to living with a chronic health condition. Professor Paul Gilbert, who founded CFT, defines compassion as ‘a sensitivity to suffering in self and others with a commitment to try to alleviate and prevent it’. Through the practices of CFT we can learn to respond to our suffering with wisdom, kindness, courage and care, instead of self-criticism and shame from our body’s threat response system. In fact, a research review published in 2020 found that a compassion-focused approach helped people struggling with long-term physical health conditions by improving their ability to cope with difficult emotions, helping them to feel less isolated, and reducing anxiety and depression.
As well as helping you to manage the thoughts and feelings that medical conditions can bring up, a therapist can also support you through any trauma caused by your condition. EMDR and Body-Focused Psychotherapies can be particularly effective with this. Or if tests have been unable to find a physical cause and medical treatments have been ineffective, then you and your therapist could explore whether your symptoms might be part of a chronic or incomplete post-traumatic response. One aspect of this might be helping you to develop a different relationship with your body, including movement practices and self-soothing techniques.
One way of doing so is through therapeutic yoga practices, which are increasingly being shown to be helpful in both alleviating suffering and regaining a sense of identity, control, and connection to self. According to Dr Bethany Stroyde, clinical psychologist and qualified yoga teacher: ‘Yogic breathing practices can be particularly powerful as a way of managing difficult emotions and sometimes even pain itself, as they directly work with our nervous system and help to calm the threat system response. Also, while pain medications tend to become less effective over time, even with increased dosage, breathing practices tend to become more effective with time and practice.’
Of course, there is no single simple solution for managing your wellbeing when dealing with a chronic illness. Instead, it is more a case of developing your own individual toolkit of self-care strategies over time. This can take a lot of patience and practice, so go easy on yourself. Most importantly, remember that you don’t have to do it all alone and that help is out there for you.
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