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.
Please believe us - a call for empathy for Long Covid patients
Along with many others in the chronic illness community, I have known that there would be a post-viral health crisis from Covid-19 from the start of the pandemic. There is strong precedent: six months post-infection with Ebola, 90% of surviving patients hadn’t fully recovered and 87% of those who had SARS still had health problems. There is also a history of people with seriously debilitating ill health not being believed and told, as is happening right now, that their extreme fatigue, brain fog, strange bodily pain, sleep problems, even taste and sight loss etc, are due to anxiety.
It was one of those horrific things you wish you didn’t know and I have felt like a bystander watching a natural disaster, unable to do anything to stop it. What I can do is share my knowledge around coping with fatigue conditions and speak up about how people with continued ill health months after COVID-19 infections are being treated. It is all too familiar to me, both as a patient and as a therapist who frequently works with people who have had their health problems dismissed, told their pain is in their heads, some disbelieved by loved ones and those who have even later died because a doctor didn’t take their symptoms seriously.
I have a complex health history myself, suffice to say it took 24 years to have endometriosis investigated and diagnosed and that I literally wrote the book on what it is like to live with chronic fatigue syndrome/ME. For those who don’t know, even at the level classed ‘moderate’ it can be a living death of unimaginable fatigue, pain, cognitive problems and severe restriction. One that almost no one else understands.
A large part of the emotional toll of having complex physical health problems is having a medical culture whose response to something they don’t understand can be to deny that it exists. Chronic illness patients are all too often met with the arrogance of medics who would sooner label you ‘anxious’ than admit they don’t know what is wrong with you. There are of course many fantastic doctors out there, and two of the best I have encountered have at times told me that they don’t know what to do to help me, leading to a collaborative search for information and search for coping strategies. The feeling of being believed, supported and cared for was precious.
There is of course a psychological element to living and coping with any of the physical conditions referred to here, just as with the more readily understood experience of a diagnosis of cancer: you feel fear, loss, isolation and low mood at the suffering and uncertainty. That does not mean that the illness is in your mind, the part that medicine often fails to understand is that the brain and body are inextricably linked and that stress can exacerbate pain, that trauma can show in the body but that doesn’t mean there are not lesions, disease, dysfunctions that are causing real physical symptoms and need attention. Ironically, the long-term effect of not being believed and supported can of course be anxiety and depression and physical deterioration as it becomes harder to engage in positive self-care strategies.
Compassion and understanding are what is required, whether or not a medical professional knows the facts. I have experienced both being told that my pain ‘isn’t anything to worry about’ and being left to endure it, and being heard by a doctor who vows to do what they can to help. There is a world of difference in these encounters and yes, they do affect a patient’s mental state. The former decreases mood, derails hope and even damages self-image: I have even met people who have been so consistently disbelieved that they doubt their own physical reality.
My effectiveness as a psychotherapist is largely in the power of the human relationship a person experiences when they are heard, believed and fully accepted. An experience some have never received from another, whether they were abused as a child, are experiencing relational problems or live with chronic physical illness. In every encounter I have the power to assist in the healing process or do further damage, the difference between this and the doctors I speak of is that I am acutely aware of that power and aim to approach every encounter with curiosity, love and faith that the person in front of me knows their own truth. And I can sit with the discomfort of not knowing.
People experiencing longer term symptoms following COVID-19 aren’t experiencing something new when they are dismissed as merely anxious - their all too close cousins are people with ME who are still fighting for adequate research and treatment after decades of dismissal with cognitive behavioural therapy (CBT). There is a frightening amount of overlap between reported symptoms in post-Covid illness and ME, all the additional symptoms patients are reporting are familiar to me. That is not to say that ME and ‘Long Covid’ are the same thing, they can’t be, and many other conditions have overlapping symptoms: fibromyalgia, chronic Lyme disease, etc, but what we do know is that 80% of people with ME developed it after a viral infection and the protracted recovery and cycles of immune and other systemic bodily dysfunction are strikingly similar.
The only voices that make sense in this field are people working quietly on multidisciplinary approaches to recovery from multi-system illness combining deep rest, nutrition, meditation, neuroscience and psychology to reset the body’s systems. There are some convincing theories on what occurs in the human brain when a person develops a chronic condition but they don't involve drug treatments, so funding for trials necessary for mainstream recognition are hard to get. But COVID-19 patients aren’t there yet, they have potential lung and heart damage that needs attention, even those who haven’t been hospitalized have often experienced the trauma of facing death. They have immediate need for medical care, in all senses of the word. Part of the problem of course is the invisibility of the majority of symptoms and that self-reporting of pain and fatigue is required as they cannot be objectively measured. We just need to believe people.
If an estimated 1/10 patients have post-Covid illness, many of those will get better in time. If even a small proportion of those never fully recover, we are looking at potentially tens of thousands of people with new chronic illness in the UK alone. It is time to take a look at our culture, the way we respond to chronic invisible illness and disability with fear and avoidance, the way we don’t value those who are not economically active, the lack of compassion we have for what we don’t understand. Doctors, scientists, politicians, policy makers, employers, everyone, please don’t wait until you experience this for yourselves before you believe all of us.
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.
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
Enabled: 10 reasons why working for yourself can work for people with long term health conditions. 02/02/2014. Archived.
Why people say hurtful things to people with chronic illness and what we really want to hear. 24/04/2014 - archived.
Faced with yet another health issue? - 5 areas for coping - 10/06/2014 - archived
Modern Sleep Problems – 10 habits for a good night’s sleep. 13/02/2014 - archived
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