Whilst we often hear about the fact that trauma can lead to chronic illness, something that we talk about less often is how having a chronic illness is a traumatic experience and can cause trauma.
So, as today is World Mental Health Day, and I’ve just experienced a pretty traumatic health crash, what better time than now to talk about the trauma of chronic illness? So here are seven things about chronic illness related trauma.
1. Trauma can come from helplessness
Whilst we often think of trauma as coming from a specific traumatic event or ongoing traumatic events in childhood, we often don’t recognise that severe illness can be a very common cause of trauma.
Trauma is defined as a response to deeply distressing events that overwhelm someone’s ability to cope or cause deep feelings of helplessness. Sound familiar?
Having a chronic illness is definitely distressing and can cause very intense feelings of helplessness. When I was particularly sick over the last two years, I struggled a lot with how little I could do to change my circumstances. There was nothing I could do to make myself less sick. I could not solve my financial issues as I was too sick to work. I could do very little about my loneliness as I was too sick to get out and see anyone. I felt completely helpless.
2. Triggers can show trauma
Many people with chronic illnesses struggle to cope with seemingly “normal” and everyday situations. Things such as booking a medical appointment can be triggers. Many of us try to avoid triggers wherever possible.
I know this is the case for me. I didn’t visit the doctor for two and half years, despite having a long list of symptoms that needed attention. I constantly made excuses as to why I couldn’t go.
But it was only a couple of weeks ago that I realised that I have trauma from being sick. Finally, the inevitable happened, and I caught Covid. After six months of being relatively well, my energy levels suddenly returned to where they were during my big crash. Since getting Covid, it has been a battle not to feel triggered every time I feel tired or symptomatic. It takes me straight back to the way I felt over those years.
One example that stands out for me. I went for a ten-minute walk on day ten of being sick with Covid to get some fresh air. And I couldn’t manage it. It took me straight to the fear that I would once again be predominantly housebound and lose everything I had gained, over the last year, triggering a massive trauma response in me. Yet it is fairly normal to still be exhausted on day 10 of Covid. But for me, it was mixed with a lot of past trauma, which made it a much more intense experience.
When you are sick with a chronic illness, somatic (bodily) trauma responses aren’t always easy to distinguish. Many of the more physical symptoms of trauma, such as palpitations, dizziness, and unidentified pains, are symptoms that come with chronic illness anyway. Ss so much of chronic illness trauma centres around our bodies and what they can and can’t do, it can be hard to disentangle specific responses.
3. Trauma with a chronic illness is ongoing
Unlike many other types of trauma, trauma from chronic illness is an ongoing thing. You cannot avoid the triggers. You cannot remove yourself from the traumatic situation because it is quite literally you. Moreover, it is, for many people, something you are stuck with for life.
What that can mean is that a lot of people dissociate from themselves and their identity, disconnecting from their bodies as much as possible, which in itself can be unhealthy.
One of the things that trauma therapy tries to accomplish is to reduce hyper-vigilance (the state of being constantly alert for incoming triggers, and, therefore, constantly exhausted). The problem is that when you have a chronic illness, often hypervigilance is medically very necessary. For example, with ME/CFS, you have to monitor how you feel all the time to make sure you are pacing correctly. Overdoing it can permanently damage you. With diabetes, often you have to manage your sugar levels constantly. You have to have a level of observing your body, which can make this kind of trauma difficult to deal with.
4. Often related not just to the past, but intrusive thoughts about the future
As chronic illness-related trauma is ongoing, unlike many other types of trauma, it often doesn’t just involve flashbacks or triggers related to issues rooted in the past. More often than not, it is focussed on the future, possible deterioration of symptoms, etc.
The reality is that people with chronic illnesses know they cannot trust their bodily health always to be good. Most have experienced intense health crashes, not always caused by something within their control. So the possibility of an illness-related future trigger is always there.
For example, when I got Covid, I hoped that things would be different this time. However, the last time I got a virus, I spent the next two years practically housebound and lost everything. It is only natural that, with this previous experience of my body, I was triggered as soon as my experience with Covid felt similar. I was terrified that I would once again become housebound.
If you have a degenerative illness, you have medical expectations of your body, and it can be very scary knowing what is likely to happen in the future. Therefore, often illness-related trauma causes you to project into the future, as well as having the more commonly understood intrusive thoughts and flashbacks to the past.
5. Side effects of trauma include depression and anxiety
Side effects of trauma can include depression and anxiety symptoms. These are very common in people with chronic illnesses. It is important to acknowledge that these are not caused by ‘attention-seeking’ but due to very real-life circumstances. Circumstances that cause physiological changes in one’s brain and body.
6. Medical care – or lack of it – can be traumatising
It is not just the bodily experience of being sick that can cause trauma in people with chronic illnesses. Medical care, or the lack of medical care, can also cause trauma.
Medical procedures, in themselves, can be painful, embarrassing and traumatic. Medical staff are not always aware of this. They also often do not have the time to provide the empathetic care people need. Being in a hospital regularly, however nice the hospital and however good the care, can be traumatic.
Conversely, being sick and being told there is nothing wrong with you, or that it is all in your head and you are making up symptoms for attention, can also be hugely traumatising.
There is a lot of acknowledgement of the role that medical gaslighting can play in mental health. Beyond this, it is important to acknowledge how that can play a role in trauma for the chronically ill. Not only can it make it hard to trust yourself, but it can make it very difficult to trust the people who are supposed to help you when you are sick.
A classic example of this might be graded exercise therapy (now, thankfully discredited and no longer recommended in the UK). This was rolled out as the standard treatment for ME/CFS sufferers by medical practitioners, over several years, under instruction from NICE – and which rendered the vast majority of them even sicker.
Trauma can even come from people trying to help you with trauma, such as therapists. As an illustration: at my lowest point last year, I finally decided to visit a therapist. On about the fourth session, when I hadn’t done the meditations she had asked me to do the week before, as I had been too sick, she told me, almost word for word, that she could not help me as I was too sick to deal with my mental health. This was, unsurprisingly very traumatising. Not only was she saying I was beyond help, she was essentially saying I could never deal with my mental health issues because I was always going to be chronically ill!
7. Trauma-informed and chronic illness-informed help does exist
Trauma is widespread amongst people who are sick and it is not yet spoken about enough. That said, trauma-informed and chronic illness-informed care does exist. And it is definitely worth looking out for both if you are seeking therapy.
Therapists who are educated about trauma and chronic illness can be very helpful to people with chronic illnesses. There are many techniques to help reduce the impact of trauma on an individual, such as acceptance therapy. Alongside that, many practices can help you reconnect with your body. Examples of these practices include meditating, gentle movement (for those who do not get hypoxia), journalling, EFT (tapping), etc.
That means you don’t always have to deal with the full range of symptoms caused by trauma. So if you are struggling, please do reach out for help. You can be helped; the support is out there.
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