Whilst we often hear about the fact that trauma can lead to chronic illness, something that we talk about less often is the way in which 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 from 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, one of the things I struggled with most was 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, and 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 really struggle to cope with seemingly “normal” and everyday situations, such as booking a medical appointment, as this can be a trigger, which is something people generally want to avoid.
I know this is the case for me. I didn’t go to the doctors for two and half years, despite having a long list of symptoms that needed attention, and I constantly made excuses as to why I didn’t.
But it was only a couple of weeks ago that I really realised that I have trauma from being sick. Finally, the inevitable happened, and I caught Covid. After a period of six months of being relatively well, all of a sudden, my energy levels were back to where they were during my two-year crash; and, since getting Covid, it has been a real battle not to be triggered every time I start to feel tired or symptomatic, in the way I was, over those years.
One example that stands out for me. I went for a five- or ten-minute walk on day 10 of being sick with Covid to get some fresh air. And I couldn’t manage it. This 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 this is a seemingly normal thing to have done – and 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 particularly easy to distinguish, as many of these more physical symptoms of trauma, such as palpitations, dizziness, and unidentified pains, are symptoms that come with chronic illness anyway. And, as 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, and you cannot remove yourself from the traumatic situation because it is quite literally you, and 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), but when you have a chronic illness, often that 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 but, more often than not, 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 that previous experience of my body, I was triggered at the first suggestion that it might be going to process Covid in exactly the same way as it did the last virus!
Similarly, 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 illness, and it is important to acknowledge that these are not caused by people being weak or attention-seeking but due to very real-life circumstances that cause physiological changes in one’s brain and body.
6. Medical care – or lack of – 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, nor do not always have the time to provide, the empathetic care that people need. Being in hospital regularly, however nice a 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 all be hugely traumatising.
There is a lot of acknowledgement of the role that medical gaslighting can cause in mental health, but 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 and provide you with care when you are sick.
A classic example of this might be graded exercise therapy (now, thankfully discredited and no longer recommended in the UK): 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, because 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
Whilst trauma is widespread amongst people who are sick, and it is not yet spoken about enough, 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 who are educated about 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. And alongside that, there are many practices that can help you to reconnect with your body, such as meditating, very 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.
If you enjoyed this blog post, feel free to have a browse of the rest of the blog. If you’d like to receive the new blog posts directly to your inbox, so you don’t miss one, you can join my mailing list here. You can also buy me a coffee through my Ko-Fi page, or if you are interested in receiving regular rewritten disabled fairy tales and other great rewards, you can sign up to be a monthly donor.
