My Quest Hub
Therapy and Autoimmune Disease
Sarah Roberts is a QCH therapist, an Autoimmune Protocol certified coach and an AMDR practitioner.
Due to her own experience recovering from rheumatoid arthritis, Sarah specialises in working with adults with autoimmune conditions and other health challenges, using safe, evidence-based approaches to help them find ways to feel better and live well.
She also supports parents and carers who, like herself, are caring for children and young people with medical conditions.
Therapy and Autoimmune Disease
Due to Covid-19, health has been at the forefront of world news over the last 3 years, with much discussion about immune systems not functioning normally.
In 2022, a Canadian study reported that nearly 80% of Long Covid patients had signs of autoimmunity, and a 2023 study in The Lancet indicated that people who’ve had Covid-19 have significantly higher risks of developing a variety of autoimmune diseases.
But what is autoimmune disease?
‘Autoimmune disease’, ‘autoimmune conditions’ and ‘autoimmunity’ are umbrella terms given to a large group of health conditions.
It happens when our immune system gets confused and begins to treat some of our own cells as invaders. This can lead to inflammation and damage within the body.
As many as 140 conditions have been identified as autoimmune. The common feature is that the immune system is seen to be ‘attacking’ our own tissues. The difference is in which body part is affected and this is how medicine defines each condition – by the symptoms it causes.
Although autoimmune conditions have different symptoms and affect different parts of the body, they all develop from the same underlying autoimmune process:
- A normal antibody makes a mistake and wrongly identifies one of our own cells as ‘foreign.
It becomes an ‘autoantibody’, meaning ‘antibody against self’.
This signals to our immune system to treat these cells as invaders.
- The regulatory part of our immune system that should eliminate these autoantibodies fails to work.
- The immune system is stimulated to attack by another aggravating factor, such as:
- particular infections and viruses
- certain chemicals, pollutants and toxins
- hormonal change
- certain compounds in foods we eat
- the state of our gut health
- nutrient deficiencies
- some medications
- insufficient sleep
- extreme exercise or being too sedentary
- As a result of stages 1, 2 and 3, enough damage occurs in our body to manifest as symptoms, so we are diagnosed with an autoimmune condition. What disease you are diagnosed with depends which cells in your body are affected by this process, and what symptoms you display.
Here are a few common autoimmune conditions in the UK:
|Condition||Number of known cases in UK in 2015|
Over 2 million
Type 1 diabetes
75% of those living with autoimmune disease are women.
In 2015 incidence of autoimmune disease was increasing by 19% worldwide, and in 2018 research found a 9% increase in the UK alone.
Studies suggest this is rising even higher since the Covid-19 pandemic.
In 2021, 4 million people were living with autoimmune conditions in the UK, 1.3 million of them with more than one condition.
Nearly 4% of the 8 billion people in the world are affected by one or more autoimmune disease.
That’s 322 million people!
This all means there are HUGE numbers of people living with autoimmune conditions, all over the world.
What these statistics don’t reveal is the person behind each of those numbers, and the effects on their everyday life.
And for every person living with the condition themselves, those around them are also affected – their family, friends and colleagues.
If you or someone you care about are affected by autoimmune disease, I have some idea what you may be going through. I have two autoimmune conditions and have recovered from severe illness with rheumatoid arthritis. Learning to live with autoimmune disease, improve how I feel and look after myself so I can live well has led me to what I do now, so I can help others in a similar position to where I found myself.
I’d like to share with you some of what I’ve learned through working with clients with autoimmune disease.
How can living with autoimmune disease affect our mental health?
Apart from the fact that pain and other symptoms can be disheartening and difficult, it can be slow and challenging to actually get a diagnosis, with average time to taking between 4 and 10 years.
Research indicates that 45% of patients later diagnosed with a serious autoimmune disease had been labelled as hypochondriacs in the early phases of their disease.
Not being believed or helped over such a long period of declining health can be traumatising and demoralising in itself.
When you finally get diagnosed, doctors commonly explain autoimmunity to a patient something like this:
“Your immune system is attacking your XXX (joints/ eyes/ skin/ thyroid/ organs etc). We don’t know why it does this. This can cause permanent damage to your XXX (whichever body part is affected by the autoimmune inflammation).
To limit this damage, we’ll treat you with immunosuppressants to suppress your immune system’s ability to attack. This will affect how your whole immune system functions, and limit its ability to cope with things a healthy immune system should do, like fighting off a virus, healing a wound or finding and destroying cells that may be cancerous.
You’ll need to be on this drug for life. Tell us if you want to get pregnant, as this medication can damage to the baby.
You’ll need regular tests to check if this medication is damaging your liver/ other organs.
The medication has its own risks and side effects… (which differ between different drugs).
You need to pace yourself and plan your life so you don’t exhaust the reserves your system does have.”
This can be an alarming message to receive. It can be challenging to process what it means for you.
It’s normal to have lots of worries, about things like:
- getting other health problems as a result of being autoimmune, especially if you’re on immunosuppressants
- what this means for your social life
- being able to work, travel or get pregnant
- your income
- medication costs, side effects and risks
- coping with medical procedures
- making decisions about treatments
- being less able to do things
- your ability to look after your children and other dependants
- whether your children will also get ill
- being dependant on others
- your life expectancy
By the time of diagnosis you might already have been living with the impact of your condition for some time, and if so, it’s probably already affected things you enjoy.
You may feel alone, especially if no one around you has this type of condition. It can be especially difficult and isolating when your condition affects intimate aspects of life and relationships. You may have significantly limited what you do, as a way to cope and avoid embarrassment and stress.
Coping with this type of health challenge can evoke all sorts of feelings, including sorrow, anger, fear, loneliness and frustration. It’s common to feel out of control of your situation and overwhelmed, especially when you’ve been told your system is ‘attacking’ you.
It’s understandable to experience anxiety and low mood when you’re dealing with ongoing pain, fatigue and other symptoms, coping with your diagnosis and having treatments which can make you feel very rough.
You might have some beliefs about why you’ve got ill, how you developed the condition and what you ‘should’ have done differently or ‘should’ be doing now. You might be berating yourself for lifestyle choices you now regret, telling yourself ‘I’m ill because I’m too lazy/ I’ve eaten all the wrong things/ I’ve been too busy with work etc, so it’s my fault because I haven’t taken care of myself.’
I’ve noticed that my autoimmune clients are often conscientious types who have prioritised other commitments above their own needs. Rather than acknowledging their own generous and committed natures, they can see this as another reason to blame themselves for getting ill.
Autoimmune clients also often present with a high level of stress. Autoimmune diagnosis tends to happen when symptoms have reached a peak, which is common during a time of additional stress and turmoil, such as a bereavement, divorce, work stress, an intense family situation, or other trauma. This stress is then exacerbated by your deteriorating health, so it can feel like you’re stuck in a downwards spiral of stress and illness.
Living with a diagnosis can be highly stressful, especially when it’s having profound consequences on your life and your family. It can affect how you see yourself, your body, and your identity. You might wonder how you’re going to change and who you are going to be now you have this health situation to manage.
How can therapy help?
In my experience, clients have usually received no help with the emotional side of their physical diagnosis, before coming to therapy.
QCH practitioners like myself start by listening and taking a full history of how you’ve got where you are.
History taking at your medical appointments may have been thorough, but will usually focus on aspects which are most medically relevant to form a diagnosis, with little time or resources available for emotional support.
So therapy may be the first time when you can share the full impact of what’s going on for you. Being able to tell your story can be cathartic and revealing.
Therapy offers a time and space for you to talk through your thoughts and feelings. The therapist is there just for you to give you an opportunity to process this change.
Being treated with respect by a therapist can be especially validating if you’ve been dismissed by other professionals before.
It’s important to choose a therapist you feel comfortable with, so you feel safe to discuss the impact of difficult symptoms, your private feelings, or whatever is most important for you. A trusting relationship and good rapport can help reduce isolation and relieve any shame or embarrassment you feel about your situation.
Changing your narrative
With an autoimmune diagnosis, you’ve probably been told that this is a lifelong condition with no cure. So you might find you’re believing (and saying) things like, “There’s nothing I can do…I’m never going to feel better…I’m going to be like this forever.”
My role is to listen to the language you use and the meaning you give to things. We’ll talk about your beliefs and what meaning you attribute to your health situation. I’ll guide you to identify what positive statements you would rather believe.
This could be something like, “There are things I can do, because I can learn about what can help, so I can try it myself, and that means there are actually things I can do to help myself.’
Therapy allows you to address past experiences that influence how you see your health and how you look after yourself. It helps you imagine positive instead of negative futures and can restore your belief that you can trust yourself and your body.
The importance of resourcing and self-compassion
I work with all my clients on building up your resources, to help you feel more positive, less overwhelmed and more able to cope with your situation. We’d work out ways to increase the amount of pleasure you have in your day, which might have vanished as a result of the sheer struggle of being ill.
Examples of useful resourcing techniques include:
- visualising a safe place where you can feel calm, relaxed and away from stresses and difficult symptoms
- in the evening, writing down three good things that happened during the day, and your part in them
- relaxation, breathing and tapping exercises you can use any time, to help your system calm down and regulate itself
- doing something nice for yourself
- exercises to increase self-compassion
Building self-compassion is especially important when you have autoimmune disease, because our relationship with our self can have taken a knock.
You might have complicated and not very compassionate feelings towards an immune system you’ve been told is attacking you. Maybe you feel your body has betrayed you, or you wish you could just chop off the bits that hurt the most.
When we feel this way, we’re rejecting part of ourselves. Similar to how our immune system is having a go at our cells in an unhelpful way, we’re attacking ourselves emotionally. Therapy can help us understand and improve how we feel about all aspects of ourselves. It can help us accept, appreciate and help all these different parts, including the ones that are really in pain and struggling.
Self-compassion exercises help us accept that we’re coping with something very tough, and that this is happening simply because we’re human, not because we’re a bad person. Developing self-compassion helps us feel more kindness and compassion towards ourselves and the predicament we’re in.
This softening towards yourself is a very important step in respecting your own needs and feelings as valid, and allowing you to care for yourself really well.
Therapy can help us accept the whole of ourselves, health challenges and all. It can help you turn towards your body, including your immune system, and instead of seeing it as causing your problems, to be able to love it in its struggle, and appreciate what it is trying to do for you.
This compassionate acceptance of our whole experience can be very healing and really reduce the idea of an ‘attack’ situation going on inside us.
Changing your ‘locus of control’
Autoimmune disease and other chronic illnesses can make us feel quite helpless and out of control, especially with the idea that it’s our own body doing it to us.
The fact that you choose to come to therapy to explore ways to help yourself is a crucial part of why therapy is helpful with this.
You may have experienced disabling symptoms and felt vulnerable as things you once took for granted became impossible. You might not feel in charge of your own situation.
Taking positive action for yourself, such as choosing to attend therapy, is a proactive step towards reclaiming your sense of agency and autonomy. By doing this, you prove you can help yourself. Therapists call this having an ‘internal locus of control’, meaning we realise there are things we can do to help ourselves, and we can choose to help ourselves, rather than feeling we don’t have any control.
Understanding more about what’s actually going on
I take time with clients to explore what is actually going on with the immune system in autoimmune disease. Most people have a limited picture of what autoimmunity is about, as we don’t need to until it happens to us. A good place to learn more about this is by finding out about the Autoimmune Protocol, or sign up for my mini course on Understanding Autoimmunity.
We saw earlier that as well as antibodies making mistakes and treating our own cells as foreign invaders, the regulatory part of our immune system also fails. This means that the ‘attacking’ part of the immune system can’t stand down, because it doesn’t get the message that all is well, and it’s actually all a mistake.
This means we need to focus on calming a system that is on continual high alert, so that the ‘attack’ part can stand down, and our system can begin to regulate itself well again. The aim is to balance your immune system, not ‘boost’ it.
I use language and techniques that support this aim of calming and balancing, because we want everything to calm down, not ramp up. Visualising and exploring what you believe is going on in your body can be very illuminating.
Personally, I don’t like the description that the immune system is ‘attacking’ us and I tend to avoid terms like attack when working with clients. The terminology we use with ourselves when living with an autoimmune condition is important.
The immune system is in fact trying to be helpful and has made a mistake. Our immune system is working extra hard in autoimmune disease, and intending to help us, because it thinks we need this.
It is not doing this out of any ill will towards us, or because we deserve it – it has simply misinterpreted a sequence of amino acids in our own tissues. It is reacting to something it thinks is a threat to us, in our best interests. It’s made an honest mistake about whether we are actually facing a threat.
This is a very interesting concept in terms of therapy, as we can do this unconsciously in our minds as well as our immune systems, so we feel on continual high alert, as if we’re constantly under threat.
In therapy we can help clients understand meanings they’ve given to things that aren’t accurate or helpful interpretations of the actual situation, and change them, so they can feel calm and safe again – just as we want the immune system to do. This is an idea we can explore further in therapy.
What can you do to help yourself?
If you’re living with an autoimmune condition, what I most want to give you is a message of hope.
Because despite what we’re told at diagnosis, research has in fact identified a number of factors known to have a profound impact on how the immune system behaves. The good news is that many of these are within our influence:
- Your daily schedule
- How you feel about yourself and your health
We can influence these with our own actions and choices. This is great news as it means we can influence whether we proceed along a path to disease progression, or take actions which support healing and recovery.
Research has shown that ways to help yourself include:
- Learn how to give your immune system what it needs to function well
- Focus on nutrient dense foods *
- Manage stress well
- Improve your sleep
- Exercise in a way that suits your body
- Get daylight, especially in the morning – dim the lights in the evening (important for our circadian rhythms, which affect immune function)
- Get outside into nature
- Connect with others
- Look after your whole health – emotional as well as physical
- Be aware of your beliefs
(*Research findings on which foods stimulate the immune system is an extensive topic beyond the scope of this article. Our gut microbiome is central to the functioning of our immune system. We directly influence this by what we eat and drink (as well as how we sleep, manage stress and exercise) and this is within our control – so we can act here to help improve and heal our immune system functioning and our overall health. For more info on specific foods, look at AIP or get in touch.)
Our mindset, our beliefs about our ability to impact our own experience and health, and our relationship with our self are key to feeling able to take action to help ourselves. Therapy can really help with these, as well as supporting healthy habit change, improving our mood, and feeling safe in our own body. It enables us to care for ourselves well, even in challenging circumstances.
There is a lot that can help you feel better and live well with autoimmune disease, and you can help yourself.
If you’d like to know more, please visit my website www.sarahroberts.uk for more about autoimmunity and how you can work with me.
I also offer short courses on
- Understanding Autoimmunity
- Coping Well with Medical Appointments, Decisions and Treatments
- Looking After Yourself as a Parent/Carer of Children with Health Needs
Please feel free to email me at email@example.com to find out more.
The Wahls Protocol – Dr Terry Wahls
The Paleo Approach – Dr Sarah Ballantyne
The Autoimmune Wellness Handbook – Mickey Trescott and Angie Alt
Coping – Rubin Battino
How Your Mind Can Heal Your Body – David Hamilton
The Body Keeps the Score – Bessel van Der Kolk
When the Body Says No – Gabor Mate
Living with the Enemy – Ray Owen