Writing about living well with chronic health problems, mindfulness in action and common mental health problems and everyday living. For older articles see archive page and for CFS/ME Support for Family and Friends book click here.
Chronic pain: What therapy can help with? Article on BACP website - March 2023.
What is chronic pain? How does pain affect your mental health? Can counselling help, and what types of therapy are best for chronic pain? Our member Elizabeth Turp explains. Read here
The Reluctant Client – answers to common concerns about counselling
Do you need help but there’s something holding you back? In 20 years as a counsellor some of the most profound change I have witnessed has been in people who were initially the most unsure about counselling. This can take many forms: cynicism, disbelief, shame, fear, embarrassment, even scorn. Here are some answers to common concerns:
‘How can talking possibly help?’ Giving voice to your emotions and experiences can immediately transform not only how you view them, but also how they feel. It is often the defensive layers on top of our issues that become the problem – anxiety and depression can be a protection against a trauma or unexpressed grief - once acknowledged and given space they lose their power and can be processed. Talking is connection, and one human offering another deep understanding, care and attention can help you heal from the times those have been missing in your life.
‘I’m scared it will be overwhelming’ An understandable fear for people who have held in strong emotion for a long time. If you find a skilled counsellor with whom you feel safe, they will help you prepare before you are ready to go deep, building trust and going at your pace. In my experience, memories arise and areas are explored only as you are ready for them.
‘I don’t know what sort of therapy I need’ This can be complicated as there are many styles and theories. You can get a recommendation, or search an online counselling directory that lists qualified and insured practitioners such as BACP for local counsellors, then read some profiles and see who you are drawn to. You can get a feel for a counsellor from how they present themselves. Give a couple of them a call, email or text and ask some questions. You are the customer and a good counsellor will be prepared to answer any concerns you may have.
‘What if I don’t trust/like my counsellor’ That’s easy: counselling is your choice, as is who you see. If you don’t feel that the person you are seeing is right for you counselling won’t work. You have a right to request to see another person, even if you are being seen by the NHS or a charity. It can take a couple of tries to find the right person for you.
‘What can a counsellor possibly know about my life? It’s actually the opposite, you are telling your story, counsellors are trained to put their own lives and prejudices to one side and deeply listen so that you can fully hear yourself and find your own answers – we believe you are the expert in yourself. A skilled therapist doesn’t need to have been through what you have to help you explore it, and even if they have, we are all different anyway. It’s a good counsellor’s job to match our skills to your needs, on an individual basis.
‘I won’t know what to say’ I have heard this so many times, and it is never the case. An initial session often leaves a new client surprised at how much, and what, came out, and even more surprised how quickly the time went, even people who think:
‘I can’t talk to a stranger about my problems’ This may be because you never have, or that you think you ‘shouldn’t’. Counselling exists in part because you don’t have to protect the counsellor from your problems and their lack of previous knowledge of you allows you to be fully yourself and find out exactly what you truly need, free from the expectations of others.
‘It’s too expensive’ Your health is precious. If you can afford beauty treatments, gym membership or eating out consider whether therapy is also a worthwhile investment in your wellbeing. If you are short of money a lot of counsellors offer some reduced rate sessions or you may be able to access free short-term counselling through your works’ Employee Assistance Programme (EAP).
‘It’s weak to ask for help’ A good number of people who come to counselling believe this, having been brought up to ‘just get on with it’ or told not to cry as a child. That can be part of the reason they need the help. It is actually an act of courage to explore your deepest feelings, and develop healthier ways to manage difficult emotions.
‘They’ll think I’m mad - I might be locked up’ the fear of finding out you have a serious mental health problem that might result in being sectioned can prevent people seeking help for a long time. Take it slow and ask your counsellor what they do if they have such concerns about a client. An ethical practitioner will advise a mental health assessment if there are concerns about a serious condition or medication, but often if you have this fear it is an expression of how you feel, your mind might feel ‘out of control’ or ‘crazy.’ Often you will be met with reassurance that it is more common for people to feel like you do than you might think.
‘I’ll be judged, I’m ashamed of what I’ve done’ An experienced counsellor will have heard a lot of extreme things already, and we are trained to sit with difficulty. Counsellors are non-judgemental, knowing that humans make mistakes and that there are always reasons why - we feel honoured to be alongside a person on their journey of self-exploration. If you do feel judged, that particular counsellor is not for you (or maybe anyone!), but another one will be.
Here are some things the most resistant clients have said to me at the end of their counselling:
‘It’s the best thing I’ve ever done’
‘I tell all my mates they should go to counselling now!’
‘I never knew I could feel better’
‘I wish I’d done this years ago’
So, if you are considering counselling but have reservations know this: if you have the motivation to make change and find someone you have good rapport with, counselling can be the most transformative experience of your life.
How can counselling possibly help me with my chronic physical illness? - 21/05/2014
As both patient and therapist specializing in working with people living with chronic health problems, I am passionate about the importance of addressing their emotional impact - in some cases this can be experienced as worse than the illness itself. Addressing the interaction between the body and mind is also vital when learning how to manage a chronic health problem - deny either’s role and physical and mental health can be adversely affected. Seeing a counsellor does not mean that your illness is not real or ‘all in your mind’, but that it affects the whole of you. Having worked with people specifically on coping with the following illnesses: diabetes, epilepsy, lupus, cancer, ME/chronic fatigue syndrome, fibromyalgia, chronic pain and endometriosis – here are 10 ways counselling can help:
1) Dealing with the emotional fallout of becoming ill
Getting a diagnosis of long term illness - usually following an uncertain period of ill health and searching for answers - brings fear, anger, uncertainty, sadness, distress, grief, anxiety and even shame. Suppressing these can result in depression. Counselling provides a safe space to acknowledge and express built up feelings, get reassurance that your feelings are normal and develop ways of dealing with them in the longer term. It is common to feel that you can’t fully do this with loved ones, as you try not to ‘worry’ them, and their own issues and opinions get in the way of hearing your experience fully.
2) Engaging with treatments
Medical treatments and programs such as pain, nutrition management or physiotherapy can require big lifestyle changes and a lot of effort to get the most from. If you are finding following advice difficult or feel resistant, seeking the support of a counsellor who specializes in working with physical health problems can help you work through your difficulties with these changes and consider any blocks you may have. Do you struggle to prioritize yourself; do you not see the point; are you finding it hard to make a new routine? This is often influenced by long held beliefs or roles, and therapy can be a helpful way to make sense of, and so get the most out of your treatment.
3) Reducing the impact of anxiety on symptoms
It is normal to feel anxious as you have tests and see specialists for diagnosis and ongoing treatment. However, sometimes anxiety can start to dominate, especially in conditions with uncertain prognoses, and this is not helpful to your healing or management of your health problem. Using chronic pain as an example, if we are in pain we worry, which tenses up the body, which then in turn can further increase the pain. It is also exhausting. In counselling we can find an outlet for our anxiety, a place to consider our thought patterns, understand the role of adrenaline, break the panic cycle and learn techniques to address anxiety. It is also a place to fully express our thoughts and feelings without feeling foolish or judged.
4) Adapting to limitation
One of the hardest parts of becoming chronically ill is adapting to the things that you can no longer do, which for the conditions listed earlier can range from the simple, such as not being able to do the weekly shop, to the heartbreaking: not being able to play with your child. Adaptation to limitations has two elements that therapy can usefully address: loss of the things you can’t do at all and gradual changes to the things that have such a severe payback in increased symptoms (even relapse) that you can helpfully choose to give them up in order to get a better balance and control of your pain and other symptoms. This can be a long process as we fight to hold on to how things were.
5) Grieving losses
Of all the emotional effects becoming ill can have, grief can be the strongest. The potential losses are diverse: from loss of career, friendships, ability to play sport - to self-esteem and purpose, and can lead to strong grief reactions with the same stages that follow a death: denial, anger, depression and acceptance. Sometimes people are baffled by the overwhelming feelings and tearfulness they experience and don't relate it to their health status. The counselling space provides the opportunity to make sense of these strong reactions and address them. Suicidal feelings are not uncommon in people with chronic ill health and having the support of a mental health professional can lessen isolation and so risk.
6) Learning to live in the here and now
When we become ill we think a lot about the past and what we have lost, worry about what the future will hold and fight our current situation by pushing through pain and fatigue as we try to keep going ‘as normal’, which can often make things worse. All these mean we are focusing on something other than the present moment, how we want things to be rather than how they are, which can add to anxiety. Acceptance - which does not mean that you like your situation but that you acknowledge its reality - helps people with chronic conditions to adapt to the situation they find themselves in and perversely, it is often when you stop fighting that you find you can move forward. Mindfulness is a growing therapeutic approach that some counsellors have trained in, which helps you to make choices about where you focus and to relate differently to your uncertain situation. See my article on ‘How mindfulness can help you cope with chronic illness.’ for more on this.
7) Dealing with changes in role and relationship problems
Illness can bring change that threatens the way we see our place in the world, making our ability to earn money and care for others more difficult, and in some cases impossible. Relationships can change radically. This can be emotionally devastating and hard to talk to loved ones about as we struggle to keep going in the usual way. Taking time for yourself in the form of therapy sessions to consider these issues and work out how you can make changes that will benefit your health and your relationships can really help.
8) Addressing other mental health problems
People with long term conditions can become depressed due to the strain of living with a debilitating illness, and if untreated, this can get in the way of effective coping. Some have other pre-existing mental health conditions that make living with physical health problems worse, so seeking counselling for these is a positive step. For example, if you have chronic anxiety or a childhood trauma that has not been addressed this will impact on your mood and coping, and so your health problem. A skilled counsellor will be able to help you to focus on each issue with consideration to your whole health.
9) Developing good self-care
Therapy can support you to consider how you can use chronic illness management strategies and understand how your life experiences and family role influence your attitude to looking after yourself. This can be fundamental to learning how to minimize your illnesses symptoms through making space for self-care and reducing stress to an absolute minimum. Graded activity, sleep hygiene and pacing will be familiar concepts to counsellors who have trained in CBT. In ME/chronic fatigue syndrome and other illnesses there is a lot of controversy and misunderstanding around the prescribing of cognitive behavioral therapy as a treatment. I believe this comes from therapists with inadequate knowledge trying to 'treat' it without understanding its physiology and physical basis, who have encouraged sufferers to push to relapse. There is also often confusion with ‘chronic fatigue’ or being tired all the time, which is a completely different thing. CBT, when offered by a flexible empathic therapist, is useful for living with all kinds of physical illness so long as it is underpinned by physiological understanding. Just as you wouldn't expect to reverse diabetes with psychological therapy, counselling people with the complex condition such as ME/CFS needs realistic goals about coping and management rather than promising a ‘cure’.
10) Being unconditionally heard, understood and accepted
As mentioned earlier, even with the best friends and family relationships in the world you probably won’t feel that you can be completely honest with your loved ones about how bad you feel all the time. A good counsellor is non-judgmental, deeply empathic and focused completely on you. This separation from the rest of life is one of the main reasons why therapy works. If you are considering counselling for help with your health issue, ideally get a personal recommendation from someone else with your illness, or when you make an enquiry, question them on their experience in your particular area. Just because they have listed ‘cancer’, ‘ME/CFS’, etc. on their directory page or website, don’t assume they have the experience or level of physiological and treatment knowledge you want, ask.
The big issue ‘Everyone wants COVID to be over – but it isn’t’ BACP journal article Therapy Today, November 2022
read here Catherine Jackson meets Elizabeth and other practitioners specialising in supporting the growing number of people impacted by long covid in an article on what counsellors need to know to work with people living with this complex health challenge.
Why we all need to know the truth about Long Covid - July 2022
I have been living and working with chronic invisible illness for over 20 years, and have at times faced losing everything due to health problems. But the most heartbreaking time I have experienced in my career as a psychotherapist is now. I am living in a country that is believed by many to be ‘post-covid’ while infection rates rise again, the number of people developing long-term health issues and disabilities increase daily, and data comes in every week on the increased risk of stroke and heart attack, and memory problems for even vaccinated people experiencing mild Covid.
On 1st June 2022, the Office for National Statistics (ONS) reported that 2 million (3% of population) in the UK now have post-covid health issues. 71% of these report symptoms that adversely affect their lives, 20% have issues that limit them ‘a lot’. People are losing their jobs, their homes, their relationships and hope for the future. There have already been suicides. Many had no pre-existing conditions, some had been super-fit before they caught Covid-19. People just like you.
People I have spoken to for this article alone report post-covid health impacts as wide ranging as: 50% hair loss, inability to find words, full body pain, ‘flutter pulse’ throughout body, sore eyes, tinnitus, lightheadedness, inability to walk more than a few metres, brain fog, pericardial effusion, exhaustion after standing for a few minutes, sleep disorders, sensitivity to sound, metallic taste in mouth, derealisation, being bed bound, and relapsing months after recovery.
It has been a common misconception from the start of the pandemic that the possible outcomes are a binary ‘death or recovery’. Because we are being told that Covid is ‘mild’ and death rates are lower, the average person has little idea of another common outcome: damaged health, disability and restriction: post-covid health issues show across the body and mind in multi-system symptoms. Yet reactions people receive from medical professionals and loved ones include ignorance, disbelief, denial, helplessness, minimisation, even blame. Many have been told that their symptoms are ‘just anxiety’ and refused tests.
Extracts from Paul, 47, a runner & mountaineer’s Long Covid Twitter diary @HumanOnPlanet give insight into the wide symptoms that can be experienced:
‘20/05/22: Three hours of uncomfortable sleep. Awake with fast and pounding heart, sore eyes, squelchy ears. Ashamed to say last night's pizza and small glass of red wine have probably worsened the symptoms of this latest flare-up...23/05 a particularly uncomfortable level of the clunky AC current flutter-pulse feeling and extra-loud tinnitus...25/05 Got active yesterday. Compelled to move. Couldn't sleep afterwards. Too tired to write since. Awake in bed for hours. Resting heart rate thumping into the 90s. Oxygen saturation dipping into the 80s.’
Something that intrigues me: people with a Long Covid loved one holding conflicting beliefs - thinking that no negative outcome is possible for them, despite their friend's similar health & vaccination status. Heartbreaking as this is, it sadly resonates with what I have seen over many years of working with people with chronic conditions: it is very hard for healthy people to fully see the realities of acquired disability. Even when they care deeply for a sick friend, a primal need to protect themselves against considering the possibility that they could become permanently unwell often prevents full engagement, which can be very detrimental to relationships - the ‘it won’t happen to me’ defensive belief in action.
Ableism and the marginalisation of disabled people is at the centre of this hidden situation as health policy now favours the perceived healthy and economically active majority getting ‘back to normal.’ Ironically this is leading to a sizable minority who will never do that again because we are not taking simple precautions as we go about our lives post-lockdown. Masking in indoor spaces reduces transmission risk substantially, ventilation does so even better, meeting outside where possible offers huge reduction in risk. Lateral flow testing, while not 100% accurate, provides at least some guidance before we mix with others.
For those of us who already live with chronic illnesses that limit our quality of life, ability to earn money and reach our potential, watching many more join our isolated and misunderstood ranks is an unprecedented worldwide disaster, but it is not a new situation. The chronically ill, health historians and many scientists knew this was coming as the pandemic took hold. Some of us have been talking, writing and tweeting about it since April 2020, see @lizahpool for my efforts. As many have commented, specialists who claim not to know about post-viral disability can hardly be called experts: mass disability has been a feature of many modern pandemics : MERS, SARS, Ebola and polio.
The ME/CFS community has lived with an illness that maps onto a large section of Long Covid patients’ experiences that have been misunderstood, under-researched, misdiagnosed even mistreated for decades - 80% of them in one Action for ME survey reported a post-viral trigger. Long Covid sufferers have had some of their most helpful information on coping, pacing and the need to rest from them. It is heartbreaking watching people discover the lack of medical knowledge and treatment available and the lack of empathy that can be encountered even from close family when they don’t recover.
T Davies, 52. ‘I had long covid for around 18 months. I was ill in March 2020 for 6 weeks, fine for about 3 months, then floored by fatigue, cough and palpitations. I was lucky to be able to rest whenever I needed to because I'm a family carer and was able to do what I have to, then lie down in between. I'm pretty much better now except if I stress my lungs, say by running.’
The situation has been described as the largest mass disabling event since World War II with now an estimated 100 million people worldwide experiencing changed health. Even if many of these make a full recovery over time, it will leave massive problems on an individual, family, societal, economic and healthcare level. Every day I wonder why no-one with any power seems to care. Unfortunately, I suspect the explanation is similar to the mass ignoring of the creeping reality of climate change: short term financial and political aims dominate; humans often cannot contemplate problems they have not personally experienced; people are using all their energy to survive their own individual challenges and often deal with fear of illness and death using the psychological defence of denial. As any therapy professional knows, this is not always the healthiest strategy.
Long Covid poses a threat to society as we know it, affecting workforce numbers, adults’ ability to provide care, and young people’s ability to complete education. Alongside the challenges of climate change, this could be disastrous. If you are thinking ‘but I don’t know anyone with Long Covid’ there are a few explanations: some people aren’t linking their new health issues to an earlier Covid infection, some are trying to ‘push through’, people with chronic illness often don’t ‘look sick’, shame and fear are commonly experienced with cognitive difficulties and chronic illness so many aren’t talking about their struggle and the rest are at home, off sick from work, unable to socialise, hidden from view. Some may have tried to tell you and not been heard. It’s called ‘invisible disability’ for a reason.
Victoria, 29: ‘My life has been flipped upside down, an unimaginable 18 months with Long Covid. I have been dismissed from my job due to ill-health capabilities.’
If you think that people with chronic health problems who have continued to take precautions such as masking and avoiding indoor socialising, are suffering from an irrational anxiety (I’ve been accused of this and told that I ‘need to get on with my life.’ - I actually have a great life) I urge you to consider that we are actually acting from our hard-earned knowledge and experience and a deep care for our fellow humans’ wellbeing. Despite my vehemence, I am not an advocate of further restrictions, I know we have to live, earn, socialise. I just wish there was some attention being paid to risk management so that people who have no choice but to mix for work, or choose to socially, can be safer and vulnerable people can travel, shop and go to appointments again. You may believe that repeatedly getting covid is inevitable, I don’t disagree. However, emerging evidence on repeat infection’s culminative impact on long-term health strongly suggests caution.
I don’t want anyone to come to me in the future and say I didn’t try to warn them, but I gave up talking to most people about this some time ago because my vocal messaging about the risks of Long Covid have often been minimized, ignored, even pathologized. There have been rifts, friendship problems and a great deal of hurt. But I don’t regret speaking my truth because I wouldn’t wish the sort of health problems I have experienced on anyone. I am writing this because I am a human being and health professional with a duty of care to let people know that in some cases living with chronic illness can be worse than no life at all. If you take nothing else from this, please be compassionate about what people with Long Covid are facing and understand that no one is immune to it.
Please believe us - a call for empathy for Long Covid patients
Article on Counselling Directory 'How counselling can help with stress' 2013
This article gives examples of how I work using different types of counselling that you might find helpful to understand your stress and develop coping strategies.
Article for 'Welldoing' Therapy Directory - May 2015
Articles about living well with chronic illness
Enabled: 10 reasons why working for yourself can work for people with long term health conditions. 02/02/2014. Archived.
How do you cope? Article for International ME/CFS & Fibromyalgia Awareness Day May 12th 2015
Why people say hurtful things to people with chronic illness and what we really want to hear. 24/04/2014 - archived. see archive page
Some tried & tested ways to minimize jetlag - 17/06/2014. Archived
Faced with yet another health issue? - 5 areas for coping - 10/06/2014 - archived see archive page
Modern Sleep Problems – 10 habits for a good night’s sleep. 13/02/2014 - archived see archive page
10 ways to consider yourself on the holidays – ideas for good health during celebrations.13/12/2013. see archive page
Easy tips on increasing your fruit & vegetable intake - 01/04/2014. see archive page
Guest Blog: 06/03/2014
M.E. / chronic fatigue syndrome and Depression written for 'M.E. myself and I' Blog - Living life in the slow lane with an invisible, chronic illness @theslowlane_ME on Twitter