Scanxiety is the name for the period of overwhelm, stress, frustration and hyper-rumination that occurs while waiting for test results. For many of us, that’s likely a well-frequented state of mind.
Nearly 31% of people wait over six weeks for a test - not even a diagnosis - which has risen from 2.6% in 2019, thanks to Covid and a lack of NHS funding. Waiting times for referrals are also the highest they have ever been for cancer (just 75% of people are seen within two weeks of their urgent referral); gynaecology appointments, with wait times more than trebling from 4.8 weeks to 15.6 weeks in the 10 years from October 2012 to October 2022 and mental health, with 23% of participants waiting over 12 weeks to see a specialist and 6% waiting over a year.
Those waits are a luxury, given how many people don’t even receive a referral. Instead, they leave the plasticky GP surgery with water logged eyes after being told that their symptoms just aren’t bad enough or that they need to wait it out, despite having years of medical records proving their patience.
A diagnosis matters, not just because it confirms your treatment plan which offers you a route out of pain or discomfort, but because it’s validating. Waiting too long for one impacts our mental health, according to Dr Sula Windgassen, a health psychologist who specialises in improving the mental wellbeing of people with physical conditions.
She says there’s an ever growing number of clients turning to her before receiving their diagnosis to soothe their scanxiety, “particularly women with gynaecological health issues. There's a huge issue there with overlapping symptoms meaning they’re proposed about 10 different diagnoses, all of which share multiple features yet have slightly different treatment trajectories. It's a real minefield.”
This conversation on how to wait for a diagnosis without losing your mind really helped me as I repeatedly get disconnected while trying to call the hospital to chase a referral. I hope it helps you, too.
How to wait for a diagnosis
Chloe: How do you see this waiting-time stress manifest psychologically?
Dr Windgassen: It’s definitely a mix of anxiety and frustration, particularly as the absence of a diagnosis gives people a huge worry about making their condition worse or not doing the right thing for their health.
But, generally, when I'm hearing frustration and anger, a lot of it is about the healthcare journey rather than the uncertainty of the diagnosis. Consultations can be very cutting, dismissive or invalidating and patients are often worried their questions will be met with unskillful responses which then makes them feel worse. [This is often due to systemic failings meaning practitioners don’t have the time, energy or understanding to help patients, rather than down to individuals themselves.]
What impact does that waiting period then have on longer term physical and mental health? Is there a fear of the doctor or delaying consultations and treatments?
Potentially —for a lot of people it's not a choice because they're grappling with some really difficult symptoms so they have to keep going to the doctor, but there is a consultation anxiety that comes with it.
I do think when patients get new symptoms or have an unrelated illness there's a lot more reluctance to go back to the doctor. They are disenfranchised — no one wants to wait two weeks for an appointment to be told they are being hysterical or they just need to give it more time. It adds loads of admin and loads of extra stress which can make people very avoidant.
That mental load of self-management and taking responsibility for booking and chasing appointments is huge.
Absolutely, and it’s not just the admin but the stakes. If you miss one appointment you worry you’ll go to the back of the queue for something you’ve been waiting six, nine, 12 months for.
We're regularly told actually googling your symptoms is a really bad thing to do because all the results say you’re going to die, but we also need to be armed with information to be able to properly advocate for ourselves. What’s your opinion on self-research?
I advise patients to google intentionally and not reactively. If you’re not googling to be informed, there's no point engaging with information about your condition or potential condition.
Only search when you are at a level of stress or anxiety that feels manageable and you feel in control so you’re better able to filter information. Some people can do that naturally, but if you're more prone to anxiety, worry or vigilance about symptoms, it can be helpful to identify beforehand the exact information you’re looking for: what you want to know about the symptoms, whether you want to find a specific diagnosis, a management plan, the causes of a condition, etc. Try to keep to those guideline parameters and be super structured with how you search.
Be aware of what you take away from your research too. If there are lingering concerns, jot them down and work out what's the best way to address them. Is it doing further googling (likely not!)? Is it going to a trusted source such as a vetted website or back to your doctor to tell them you’ve been informed of these certain conditions (you don’t need to say it was on Google if there's going to be some judgement)?
In general, I don’t recommend forums. While they can be useful for normalising conditions, a lot of my patients say they end up being more of a hinderance. People use them as a place to vent about difficult symptoms, which is cathartic, but leaves others with the conditions scared about potential development.
How can people better advocate for themselves in medical settings? We've spoken a lot about either being dismissed or not being taken seriously, so are there ways of saying things, asking things or standing your ground that might be useful?
I have a PDF on dealing with dismissal in the healthcare system on my website, which I recommend people look at. But the general principle is to remember that you're not a difficult patient for asking questions. The gold standard for consultations is actually person-centred care, which means the individual is involved in their treatment options and decisions. In order for that to be possible, they need to be informed, so it is your right to ask questions.
I suggest you practise those questions out loud. It helps you pitch your tone in the consultation. Often, the GP room is the first time we vocalise how we’re feeling and we can feel too nervous to say what we mean or, on the flip side, we come across too confrontational.
I hate to say this because it's an indication of how flawed the system is but there’s often an inherent bias which means patients get labelled as ‘difficult patients’ by asking questions and advocating for themselves. It means that patients are more likely to be dismissed if they are experienced as confrontational.
It goes without saying that no one should be aggressive to medical staff, but unfortunately being particularly pragmatic about how you push for treatments or voice your worries will help you better navigate the healthcare system and engender the advocacy of staff within that. This may mean taking someone else with you who can talk without the stress and emotion.
What can we do outside of the doctor's surgery? How can people manage that anxiety, frustration and impatience while waiting for a diagnosis?
It is about working out what's within your control and what's outside of your control. Getting a diagnosis is at the behest of the healthcare system and waiting lists and there's nothing you can do to speed that up. Trying to find other pathways to care probably won’t help you and it's going to keep you preoccupied with the wait and vulnerability.
There are so many unknowns but focus on the things that will support your health regardless, such as eating a varied diet, eating regularly, making sure you're hydrated and having those staples that make you confident you are doing the best you can for your body. Some people like to use alternative medicines and if it's not harmful or super expensive, I’m inclined to say go for it. Anything that empowers you is going to be helpful and they can often be be super effective for stress-reduction.
And health psychologists or psychologists in general can be useful even for those who don't have a diagnosis, right?
Yes, often because they know the system which, practically speaking, can reassure you that you’re doing the right thing. We've got an area of expertise that might not be the physiological or medical side but know when you’re asking the right questions or seeing the right people. That can be incredibly mentally alleviating for lots of people.
Thanks for reading Gray’s Anatomy. If you have any tips for managing scanxiety, please drop a comment below:
Not yet subscribed to Gray’s Anatomy? Click here to sign up, or share with a friend who might enjoy this newsletter.