A couple of nights ago, just before I was about to go to bed, I started getting a creeping uneasy feeling, that turned into a fully-fledged paranoia that I was going to get thrombosis, have a blood clot, and then a stroke. It was something that I then spent the next couple of hours obssessing over, and trying to bring myself down from the panicked feeling that I was about to die. And this health anxiety is a part of my chronically ill experience that I am really afraid to talk about.
What do I mean by health anxiety?
What I am referring to, when I talk about health anxiety, is the semi-regular panic attack spirals that I have, when I fixate on something in my body that I am sure is going to end up making me far sicker or even kill me. One of the most common things that I panic over is the big mole on my stomach – if I spend too much time looking at it I manage to convince myself that I have skin cancer, and from there I tell myself that I am very irresponsible and should have showed it to the doctor a long time ago, maybe I have left it too long and I already have lymph node cancer, and that’s it, I’m going to die. All of which I can disprove rationally, time and time again, but that doesn’t offset the panic that I feel.
Most recently, with all the uproar about the safety of the Astra Zeneca vaccine, I’ve found that every time I feel a strange or new pain in my body, which is by no means unusual, I’m convinced it’s thrombosis. Even though I know that the risk of a blood clot from the vaccine is far lower than the risk of one from flying, it still causes me to panic.
Where does it come from?
This sort of anxiety only started when I was already sick, and I think there are a few different reasons why I now do get so anxious about illness.
I am hyper aware of my body’s vulnerability
Before I became ill, I never really thought about getting sick or injured; my body felt strong and I felt, not per se invincible, but I guess I just completely took my health for granted. Since being chronically ill, however, I have lost so much due to my health, that there is no way I cannot be aware of the fact that health issues and sickness can happen to anyone. I know I am potentially vulnerable to anything – even if that risk is very low – which means I am hyper aware of my own body’s fragility – and cannot trust that it will not get sick.
Becoming chronically ill is traumatic
When I became chronically ill, my life changed drastically. I have lost a lot through my illness, and I am sure that I have a lot of trauma from such a drastic, unplanned and unwanted life change. It is, therefore, unsurprising that I am very afraid of becoming sicker, or getting some other life changing illness. It is something I want to avoid it at all costs because I already know something of how devastating it can be.
I feel like I have no one to turn to
As I think I have mentioned before, due to medical gaslighting, and the many negative experiences I have had with medical professionals, I am often afraid that if I did have some new sickness to deal with, I mightn’t get the help or answers I needed. I am only too aware of the way the medical system routinely fails people, and therefore it is hard to trust a doctor when they tell me there is nothing to worry about.
I don’t trust that I would ask for help
I have always, even pre-sickness, been afraid that I am over-exaggerating illness. When I was in agony, and my appendix was almost bursting, I tried to persuade my parents that I didn’t need to go to hospital. Seven hours later and I was having emergency surgery! This reluctance to exaggerate my symptoms has only got worse since being sick and being told I am making most of them up. When you have a chronic illness, it is hard to know which pain levels and which symptoms are concerning enough for hospital and which are not. And given that I would give anything not to have to go to hospital, I know that I am unlikely to seek help even if I really need it.
All these factors (and probably some more) mean that, when I do have a new symptom, or very intense pain, or look at my moles, I can very quickly get into a panic cycle about my health – and any number of potential cancers, strokes or heart attacks. Add in a condition that mimics the pain of heart attacks, and you can imagine, it can be quite scary.
I’m scared to talk about this
This is an issue that I am worried to talk about. When you have ME/CFS, medical staff often assume that you are a hypochondriac and there is nothing physically wrong with you. The PACE trial worked on that assumption and has underpinned treatment worldwide, for many years. Whilst I know with 100% certainty that my ME and POTS are not caused by health anxiety, but rather that it is the other way round. By admitting my anxiety, I am afraid I am opening myself up to the possibility of my illness not being believed.
In fact, a reason I won’t talk about this to a therapist is because I know of people with anxiety on their medical files who have subsequently been taken less seriously when they presented with symptoms. Friends have told me that they had substantial delays in getting a diagnosis because doctors believed their anxiety to be the cause of their symptoms. And so I feel that, as somebody with an already excluded diagnosis, I do not want to give medical professionals any further excuse to invalidate my illness and not take me seriously. So I avoid talking about it in order that it does not appear on my medical records.
How I deal with it now
I have experienced this anxiety for a few years now, so have learnt a few mechanisms for dealing with the panic – after all it is a specific sort of panic attack. And I have noticed, over time, that these attacks are becoming less – although the pandemic has not been helpful for this particular issue.
I do not google my symptoms whilst panicking
By now we all know the story: you google your symptom and next thing you have found out you have at least one terminal illness. I have found that googling my symptoms whilst panicking about them just feeds my obsessive thoughts about them. It allows me to find the ways my situation will kill me and focus on them even more. So, all in all, not very helpful! What I have learnt to do, is to ask someone around me to google the symptoms for me. That way, they can determine whether I do actually need medical attention, or whether it is purely anxiety – without me having to see all the different ways my symptom could potentially be dangerous. If no one is around, I will call someone and ask them. It is also helpful in that it gives you a calm voice of authority from someone else, to counter the panicked voice in your head.
Research symptoms when calm
If there is something that I panic about regularly and is a new, unexplained symptom, or a new type of pain, I do then research this – but only when I am calm. This allows me to learn about it when I am in a frame of mind that doesn’t catastrophise everything. This can either be by googling, visiting a doctor, or talking to other people with chronic illnesses. That way I am more informed, for the next time I panic, and can be prepared with rationalisations that everything will be okay.
Breathe
Yep. Breathing is useful! Especially when panicking, it can be easy to forget to breath and then bodies, being sometimes quite simplistic, get more panicked. Taking deep, slow breaths calms the body and slows the panic reactions down, which feeds back into your brain and makes you feel less scared (that is at least my understanding of the science).
Remind myself that I am panicking
When I remind myself that I am panicking, I can remind myself that this has happened before, and I’ve got through every time so far, which means its highly likely I will be fine this time too.
Health anxiety is scary
Having panic attacks about health – and being anxious about it – is scary and also, quite frankly, annoying.
I haven’t heard other chronically ill people talking about health anxiety so much either, so I’m interested to know, if you are chronically ill, do you recognise these experiences? And if the answer to that is yes, do you have any specific ways in which you deal with your anxiety? Please let me know.
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