This week has been Mental Health Awareness Week so l have decided to write about mental health and Long Covid.
Beware Long Post – I have tried to separate into sections and include headings for ease of pacing your reading.
Please note the trigger warnings for this blog post include mentions of Ableism, Mental Health Distress, Suicidal Ideation and Medical Gaslighting.
This blog represents my own personal opinions based on my 20+ years professional experience as an Occupational Therapist and nearly 2 1/2 years living with and advocating for those living with Long Covid. For the reasons of spoons (see spoon theory) I have chosen not to reference this as an academic piece today and present it as – hopefully – semi coherent ramblings.
How many of you experiencing Long Covid have heard any of the following?
– Your tests are normal, there’s nothing wrong, it’s just (health) anxiety?
– It’s because you are depressed.
– Think positive and you’ll get better.
– Have you tried CBT, meditation, yoga, mindfulness, etc?
And how many of you have felt as a result of these symptoms that your physical symptoms are being dismissed?
How many of you have then refused to talk about any signs and symptoms of depression, anxiety or other mental health conditions out of fear that all your Long Covid symptoms will be psychologised?
I’m going to hazard a guess and say a large percentage of you have had one or more of these experiences and I am going to discuss why I think that’s dangerous and why I’m therefore concerned by some of the discussions I see in the Long Covid community that are completely dismissive of CBT, antidepressants, the biopsychosocial model, occupational therapy, physio therapy, etc.
My Long Covid Experience
Hi. My name is Kirsty and I am an Independent Occupational Therapist and someone who lives with Long Covid and depression (amongst other things). The latter pre-dating the Long Covid by years.
Now I have what may be considered a controversial opinion.
There is Nothing Wrong with the Biopsychosocial Model – in Principle!
This model focuses on the interplay between three different facets in order to understand health and well-being.
* Bio- Biological/Biomedical
*Psycho – Psychological
*Social – Social
Let’s take myself as an example. I developed Long Covid after a COVID-19 type virus in Jan 2020 – at least that is what I believe now. To start it was treated as a ‘simple’ worsening of my long term asthma.
I was given steroids and antibiotics, more steroids, more steroids, even more steroids. Added in some inhalers. Then I had bloods, a chest X Ray and CT and Lung Function Tests. All pretty much normal – but yet I’m still really breathless and have a chronic cough (beyond what I had before).
My biological/biomedical needs were explored.
But, as my breathing started to improve on extra inhalers, some other symptoms became more noticeable. Fatigue, tinnitus, dizziness, racing heart. But I’d had my lungs looked at and COVID-19 was a respiratory disease so that was the biology bit sorted, right? Well no, but we’ll move onto the next part of the model.
I was in recovery from a severe depression, was well medicated and had attended counselling and, as the pandemic struck, the mindfulness sessions I’d been offered were switched to online. I had been walking my newly adopted dogs 2-3 a day and I am not someone who generally enjoys exercise. The pandemic and my ongoing breathing problems and frequent courses of steroids meant that I was shielding but this reduced the pressure on me having to leave the house to work. I managed to get a job working from home whilst trying to build up my business. I felt pretty stable with my mental health.
So my psychological needs were already mostly met and my GPs and asthma nurse never put my symptoms down to depression or anxiety – I have asthma, and that is what they were treating. In fact it is only now that society is opening up and expectations are changing that I am noticing my mood begin to dip into depression again.
I had recently finished a job and had intended to go self employed when the pandemic struck, I’m also single (although I do live with lodgers and my dogs). I was working from home – at times I was even advised to refrain from doing this due to talking exacerbating my ‘asthma’.
The social factors were therefore considered in terms of their impact on my health. But not fully, and it was assumed I had full control over these factors. However, the job I was doing was on a flexible contract. If I didn’t work I didn’t get paid. No furlough for me as someone who had just gone self employed. I have been able to rest to some extent but due to financial need have never been truly able to stop working to focus on my recovery.
If I had had to go out to a place of work I would have found (and would still find) it a struggle to work, but yet that is what has happened to many with Long Covid.
The biopsychosocial theory above makes sense, right? Seems somewhat logical, that all three aspects can have an affect on someone’s health and well-being. So why does that not seem to happen in practice?
How Many People with Long Covid (and ME/CFS) view the biopsychosocial model!
But here is how I hear the Biopsychosocial Model often appears to apply in Practice! (based on numerous comments by numerous people and I believe these experiences because I have heard many of them myself – add in some comments about weight for good measure and – that’s another blog post entirely.)
Many health and social care professionals and wellness professionals seem to focus on the brain/mind-body connection but often only appear to consider this as uni directional. They focus on psychology and how that affects someone’s health.
Some examples of what people with Long Covid hear:
What we think affects what we feel affects what we do (A central tenant of Cognitive Behavioural Therapy) – You are doing too little not because you are fatigued but because you are depressed or anxious (as someone who has lived with both depression and Long Covid (and ADHD) I do know the difference when dealing with them seperately, and the complication of dealing with both together).
When you are anxious your heart races that is why your heart is racing (The mind’s role in controlling automatic bodily functions – flight, fight response)
But what about the reverse.
What we do affects how we feel, affects how we think. So maybe if we look at what you can do or help you to find new things to do that can help your mood.
When your heart races, you get anxious so maybe the anxiety you are feeling is rooted in physical pathology (The body’s functions impact the mind).
In Long Covid when people are experiencing debilitating fatigue/energy limitation/symptom exacerbation this impacts what they do and how easily they can do it. Getting back to doing is not simply a case of thinking more positively and the very real physical symptoms can impact on mood and anxiety – particularly when you feel unsupported and unable to discuss them with others for fear of being disbelieved.
Depression and Anxiety in Long Covid
Research has demonstrated that many people with Long Covid experience low mood or worry. The experience of this can be quite sudden in onset or more gradual or may fluctuate along with relapses. This pattern also occurs in many people with a chronic illness and can either be primary symptoms caused by the disease process or secondary symptoms caused by the challenges of living with a chronic illness. And then in children (and therefore probably in adults too there is evidence of neuropsychiatric complications such as PANS/PANDAS, OCD, Eating Disorders, Tics, Hallucinations and more).
But does low mood or worry equate to depression or anxiety (as separate health conditions)? And would people benefit from treatments known to be effective for those conditions? – such as:
Medication (What medication does is get you to the point where your brain chemistry is more balanced meaning that you can hopefully be in a better position to begin to address some of the internal and external challenges that may impact on depression/anxiety)
CBT (Again this can be a super helpful treatment – I have used it with challenging unhelpful thinking patterns around fatigue management – but where it isn’t effective is where it is labelled as a cure for Long Covid – thinking you are better may help you feel somewhat better but it won’t cure blood clots, dysautonomia, organ damage, etc)
Other Talking Therapies/Psychologies (There are many different styles, and personal preference and the therapist/ how you relate to the therapist/psychologist, plays a huge role in the success of these interventions so don’t give up on therapy/psychology after one not so positive experience and don’t feel that returning to therapy means that it has “failed” – life is forever throwing new challenges our way. What therapy does is give you an objective person to talk to about your thoughts, and feelings and what is going on for you. Someone who is not embroiled in your day to day life and is focused on you and not how you are impacting on them.)
Exercise (Taking part in exercise depends on the other Long Covid symptoms people have – fatigue and Post Exertional Malaise/Symptom Exacerbation – Mostly NO! Muscle Deconditioning post admission to Intensive Care – Possibly Yes with precautions – see the excellent resources at Long Covid Physio for more information on exercise and Long Covid)
The answer to what works is complex, after all each person has their own individual needs.
Some notes of caution – common scales for depression and anxiety all have questions related to feeling tired all the time, difficulty with appetite, low energy etc. All common symptoms of Long Covid. So you have to tease out other impacts such as feeling hopeless, loss of joy in doing things of interest and thoughts of being better off dead or of self harm/suicide.
In my view it is always beneficial to treat co-occurring depression or anxiety that demonstrate impact on everyday function because these will have some impact on the primary fatigue caused by Long Covid and so treating them should reduce fatigue symptoms to some extent. But what that treatment is will differ person to person and should be an informed choice. As I said I take medication and I have had periods of talking therapy too but I do remember being very anti medication at one point.
But… when people experience what is, or even what they perceive to be, medical gaslighting this can lead to them being reluctant to address these issues at an early stage for fear of every symptom then being put down as being psychological in origin (this also happens with chronic physical illness too – e.g. every new symptom gets put down to Multiple Sclerosis). We know that the more severe depression and anxiety get the more it impacts on your ability to think clearly and seek the support you need. Obviously, if someone with Long Covid is expressing thoughts of self harm or suicidal ideation then they should be supported to seek help urgently, and this is where the psychologisation of Long Covid has me, and others, such as my colleagues at Occupational Therapy for Long Covid, concerned. If people are made to fear admitting to mental health impacts to healthcare practitioners because it will stop their physical ailments being taken seriously, we risk tipping the balance meaning people seek support too late or not at all. This is dangerous, and can be the direct result of poor messaging from healthcare practitioners. Don’t underestimate the impact your words can have on people!
Why does the idea that something happens in the brain or mind mean we see that as a behvioural choice – one that we can snap out of, or decide to change just like that. You wouldn’t ask someone to snap out of a stroke. History is also not on their side. Too many conditions that have been dismissed because we did not have the tools or humilty to understand them have been proven to have very real underlying pathology (Multiple Sclerosis as an example) – why should Long Covid be any different?
In fact there’s an ongoing history of ignoring the impact of post viral conditions – particularly ME/CFS, which has also been psychologised, and it is because to deal with it we have to fundamentally alter how society and services are structured.
An important call – to all healthcare professionals – to be sick does not mean that someone has to be the perfect or model ‘patient’ in order to be worthy of care and compassion.
I almost count myself lucky that I had experienced episodes of poor mental and physical health before getting ill in January 2020 because, as much as I have been able to, I have focused on pacing myself – although I don’t always get this right. I have had to work, but I am lucky enough to be able to work from home. I also was not against using aids and adaptations and relatively early on got some equipment such as a shower stool and perching stool to help reduce the energy I was expending on tasks such as personal care and cooking.
I have been working to accept the fact that I am disabled, by both what is going on inside (medical model of disability) and around me (social model of disability). This has been a rollercoaster ride for sure – and one that saw me crying this week when the pressure to see someone face to face struck a nerve and made me realise what I can’t do when I mostly try to focus on what I can.
Many of us have, when fit and well, seen disability as something to be pitied and avoided and that can lead to what we term internalised ableism, when we actually get ill.
Ask yourself if you’re avoiding:
- Seeking help
- Using strategies that could help because “I’m not that bad”
- Telling yourself “I should just be able to do the thing.”
- Or generally challenging thoughts and feelings about youself
– that you would be advising a friend to do in your position?
If you answer Yes to any of these, or refusing to contemplate that you are disabled then you might need to consider the potential impact Internalised Ableism is having on your experience.
The “Privilege” of Being Ill
And then we come onto Privilege. Now when I talk about this I do not mean that sickness brings privilege but that some of us have the privilege in society to be ill.
If you can answer yes to any of the following questions (and others I’m sure I have missed) you have privilege to take time for rest and recovery – please prioritise yourself and then join us in advocating for changes to health and social care, benefits, employment and education that support all people to reach their maximal recovery.
Do I have the Privilege to be ill?
I don’t work? Or I can afford to take time away from work?
I can work from home?
I have no caring responsibilities?
I have sick pay?
I own my own home?
I have supportive friends and family that I know would help me?
I know what I can do to help myself get better?
I can afford to pay for private support?
So what works when it comes to Long Covid and Mental Health?
Likely many things in combination. Looking at your diet, sleep, trying medication, talking therapy, CBT, gentle exercises or meditation, when it is safe for you to do so and something you want to do. Pacing your energy.
There is a tendency to think the last thing you tried before you get better is the curative factor but in reality it is the contribution of many things stacked together. Please do be cautious when people are offering cures – especially where they cost lots of money. Do your own research (I wrote a piece on Long Covid Kids blog on reading research but you can use similar strategies to think about treatments you might be offered) and, if you decide the pros outweigh the cons, go in with an open mind, but with a side dose of skepticism, and consider the impact of all the things you tried before, and which of them have been helpful. Also be cautious when trying too many news things at once – it can be hard to determine which is having the positive effect in some cases.
And remember too the old adage – time itself can be a great healer. But time alone will not sort out Long Covid. We need all aspects of the biopsychosocial model to be considered and the people and professionals supporting us to: be open minded, to consider that what they know from other conditions might not apply to Long Covid; acknowledge, that what works for 99% of people might not work for 100%; be brave, to step outside of ‘evidence based practice’, when doing nothing is more dangerous than doing something, and have humility, to work with people as the experts in their own experience.
It is rare in healthcare that any one profession or approach alone will get someone back to full health and well-being. So when I see people in the Long Covid community being negative about Therapy led services I do get defensive because those professions all have their part to play – and of course I’m totally biased when I think Occupational Therapy definitely has something useful to offer people with Long Covid.
As much as I love Occupational Therapy – Occupational Therapists (like other professionals) are not above falling into the trap of psychologising illness too (to be clear here – many psychologists do NOT psyhcologise illness in the way I have been discussing), and we can be constrained by the services we work in as well as our own knowledge and confidence limitations when working with an unfamiliar condition. We have been taught as part of our training to continually develop ourselves and our practice and those skills are needed even more when the evidence base is still developing so I’m going to take my fellow OTs back to basics.
Occupational Therapy Models and Practice
Occupational Therapists believe that engagement in meaningful and purposeful occupations are fundamental to health and well-being and the intervention we focus on are ways to support that engagement.
One of the models that we might use to conceptualise what is going on for someone is the Canadian Model of Occupational Performance and Engagement (CMOP-E). As you can see from the diagram we look at the biological (Physical), psychological (Affective) and social and much more, particularly the impact of the different environmental factors and the spirituality/core beliefs of the individual, as well as the occupations they participate in (labeled as self-care, productivity and leisure).
Some of the common challenges I see with people with Long Covid – particularly where they are experiencing fatigue are:
- Limiting what you do to manage fatigue without finding meaningful occupations to replace the space they held in your life.
- Carrying on with some or all of the occupations you did pre-illness, expecting to be able to engage with them in the same way and pushing to physical and burnout.
Occupational Therapists are what we like to call dual trained in that we look at physical and mental health in combination because to us they are intrinsically interlinked. But the fundamental thing we look at is occupation so these two challenges are the ones I usually find myself addressing.
What occupational therapists should be good at is working with the Individual in front of them, unpicking what life was like before getting ill, what life is like now and aiming to bridge the gap, or support the development of a new meaningful life.
I want to leave this blog post by empowering occupational therapists to have the confidence that they can support individuals with Long Covid, and to empower the Long Covid community to interact with Occupational Therapists who understand this complexity and nuance.
I do provide services virtually, and you can also head over to OTforLC.com for some additional resources. My colleague Jenny Ceolta-Smith and I have and can provide training for Occupational Therapists on Long Covid, so do follow us on social media or contact me if you want to learn more.
I’m interested to know your thoughts on my rambles, so do add a comment below, or find me on Twitter.