8th September 2022
“My name is Claire, and I suffer with health anxiety.”
There, I’ve said it.
It feels like I have been carrying around a dirty secret for a long time, but hopefully admitting I have the problem is the start of the remedial process. I was going to say dirty “little” secret, but to do so would perhaps undermine how big, I think, the problem really is.
Imagine two people, parting company, myself and Cancer. Cancer turns to leave but just before it does, it pauses, as if it had suddenly remembered something of great importance, returns, takes something from its pocket and presses a small box firmly in the palm of my hand and whispers, “this is for when I have gone, so you will never forget me”.
That little box, it turns out, was health anxiety.
I tried to throw that little box away as soon as I recognised it for what it was, but it seems that Cancer had pressed it so firmly into my palm that it has left an indelible imprint. No amount of soaking, or massaging it, removes the stain.
At times it feels like cancer is the gift that keeps on giving, and health anxiety certainly feels like a most unwelcome parting gift, an awful memento. Two and a half years post diagnosis, I’m still struggling.
The last 6 months have been really difficult, physically and mentally.
I started losing weight in February for no obvious reason. My appetite went, my running times were getting slower, and it worried me. I contacted my consultant after a few weeks of no improvement and had an outpatient appointment, bloods, scope and a further scan booked. He requested an urgent CT and I had the scan in the middle of July. Six weeks later and it still hadn’t been reported.
The waiting has been torture. I knew it wasn’t a case of no news being good news, it was simply that no news was no news. I chased my consultant’s secretary every week, only to be told the same thing, that urgent scans were taking 6-8 weeks to be reported.
My cancer diagnosis came at the end of a year of investigations, it seems it was missed on scope and scan, so this further delay, understandably, stirred up all those old emotions from before.
The scan, thank goodness, was finally reported after 6 and a half weeks (following an email to PALS). It was normal – no evidence of cancer. A huge relief…
Sort of.
Please hear me out.
I don’t mean to sound ungrateful.
It has highlighted that while my problem is the lesser of two evils, it is in many ways, just as hard to deal with and to treat.
Having had cancer, the prospect of dealing with recurrence would be difficult, but as I have previously blogged, I’ve been carrying around my box of readiness for that eventuality for months – I was ready. I’m always ready…
To admit that my symptoms could be driven by anxiety is very difficult. As a medic, accepting that your own pathology is functional rather than organic is particularly challenging.
Let me put it out there. I feel a huge amount of shame that this is a functional problem – I am working on this.
It is also frightening to realise how potent, how toxic, a mental problem can be. That it can induce the extent of the physical symptoms I have been experiencing is scary. I’ve lost 8kg, more than a tenth of my body weight. And I didn’t really have a lot to lose in the first place.
You really can be “sick with worry”.
I’ll never know what triggered the initial weight loss in the spring. I can, however, start to recognise that while anxiety might not have been the trigger, it has undoubtedly perpetuated the problem.
It is utterly exhausting.
Recognising that I have health anxiety hasn’t, so far, made life any easier.
I’ve mentioned previously the daily struggle I have with voices in my head. Trying to silence the incredibly loud, but irrational voice, the one that tells me “this is cancer until proven otherwise”.
The rational voice, that tiny sensible voice that tells me that, “this most likely isn’t cancer again”, is as quiet as a whisper. It is barely audible above the other noise.
And I am so aware of internalising it, intentionally so, because I don’t want my children to see, or know, what I am experiencing; for them to model their behaviour on me, and subsequently develop their own health anxiety…
But the act of “keeping a lid on it” is draining.
I have always associated health anxiety with an “irrational” fear. But the problem is, I know that all my fear comes from a very rational place. And it is still too fresh an experience to accept that it, the cancer, is gone, for good. Because of what happened on my journey to diagnosis, I still struggle to accept “normal” results. “Normal” provides little in the way of comfort. My previously “normal” results, it appears, really weren’t normal, so this time, I’m wondering, “yes, but is it really normal?”
I feel all at sea, totally adrift.
Throughout the year long pre amble to diagnosis, my internal barometer was working pretty well. I knew that something wasn’t right. I hadn’t buried my head in the sand, but presented with symptoms and entrusted my care to the “system”. Diagnosis, albeit delayed, gave me the evidence, that while I couldn’t necessarily rely on investigations, or trust the “system”, I could rely on my “gut feeling” and physical capabilities. I’ve mentioned previously that my earliest indicator that something was amiss was my physical ability. I couldn’t run to the end of the road without stopping.
That barometer has been sirening these last months, telling me that something is off. My significantly slower running times have worried me.
While I haven’t historically been able to trust the “system”, I have been able to trust myself. It’s been the one thing I have been able to put my trust in.
But it seems even my internal barometer has failed. So now, not only do I lack faith in the system, I lack faith in myself, and my ability to detect when something physically, is amiss.
It leaves me in a really uncomfortable place.
Perhaps it has been correct in alerting me to the presence of a problem – but it is a problem I have never wanted to accept.
So that’s where I’m at right now.
I had really hoped, and expected, that things would be easing with time. The emotional intensity of the last few months has been through the roof. I’ve been right back, emotionally, where I was in those first months post diagnosis – I just need to crank it all back down.
Fortunately, that one remaining fire engine, damping down the smouldering ashes never actually left the scene. It’s been doing a reasonable job up until now, but it has called for back-up – I’ve recognised that I can’t do this on my own right now. But I know I don’t have to.
And for that I am so grateful.
Image credits:
https://inews.co.uk/, https://edition.cnn.com/, https://www.merseyfire.gov.uk
Thank you for sharing your thoughts so openly. To be honest, I cannot find words to express my feelings, so I wont.
I will say that in the moments of my trials and tribulations, I have found that the faith thankfully given to me by God has proved to be a source of consolation and even inspiration.
Claire , thank you for sharing your journey. I can’t begin to imagine what you have and are still going through, but I feel reading these blogs are so important to remind/inform us that a cancer diagnosis doesn’t just stop and go away post- surgery, it continues mentally. You are an incredible woman, stay strong and keep going 💪🏻Xx