Mediated Diagnosis: Cluster Headaches and YouTube
“Medical information has been described as no longer being bound to medical institutions, but as having “escaped” into society at large by means of media and most notably new media.”
(Mager, 2009; 1123)
In her very interesting article – Mediated Health: Sociotechnical practices of providing and using online health information – Astrid Mager uses Actor-Network Theory to examine the user-provider relationship in online health information. Reading it reminded me of recent personal experience.
From the age of sixteen, I have suffered from recurring headaches. Attacks last 2 to 3 hours, and occur once, twice or occasionally several times a day. The pain is located exclusively on the left-side of my head, centred behind my eye. It’s nothing like a migraine – I don’t feel sick, or get irritated by background noise or bright lights. It’s nothing like the dull or nagging pain of a normal headache, but rather like being stabbed continuously in the eyeball. Attacks have made me cry, scream, roll on the floor, and carry out irrational acts of self-inflicted injury – during one attack, I belted my head so hard against the door to my room I made a crack in it (the door, not my head). Even the strongest prescription painkillers have barely any effect.
It was initially diagnosed as sinusitis. I was prescribed antibiotics and after 2 to 3 weeks the condition disappeared. Subsequent episodes (again lasting several weeks) occurred every few months or so. Gradually the gap between these episodes increased to a year, then several years. My last episode was five years ago (and counting!) Since that original diagnosis, I’ve changed location several times and with it, my GP. None of them ever witnessed me having an attack, or really questioned the original diagnosis. It wasn’t until my most recent episode, whilst studying in Cornwall, that the doctor actually took the time to enquire more thoroughly into the nature of my attacks. He suggested I had been suffering all this time from cluster headaches (which I had never heard of before). He still proceeded to give me a course of antibiotics – for my own reassurance rather than any belief they’d help – and I endured this latest series of attacks for a few more weeks, as normal.
But the significance of this new diagnosis was that it coincided with, for the first time, my access to an increasingly populated source of information – the web – which over subsequent years has multiplied through various forums, networks and online support groups. Sure enough, everything I read online about cluster headaches, from medical reports to sufferers’ own experiences, seemed to relate very closely to my condition: the one-sidedness, the episodic nature of attacks, and the intensity of the pain.
In a quotation on Wikipedia, Professor of Clinical Neurology and headache specialist Dr. Peter Goadsby remarks:
“Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven’t. Women with cluster headache will tell you that an attack is worse than giving birth.”
I realise self-diagnosis from potentially unreliable sources – not least on the web – can be irresponsible and even dangerous. In my case, it wasn’t self-diagnosis as such, rather following up on a diagnosis provided by a medical professional. But all the same, even given the overwhelming evidence, I was still cautious in questioning what I had been led to believe for many years. However, what has clinched it for me has been the emergence of a significant number of videos posted on YouTube by sufferers willing to share recordings taken of them during a cluster headache attack. Here’s a couple:
Watching these for the first time was a revelation – the rolling back and forth, the cradling of the head, the pacing up and down, the involuntary crying out – it was all frighteningly familiar. These videos and others like them hardly constitute a definitive diagnosis for my own condition, but as visual and explicit mediated experiences, they are highly persuasive. Even after repeated viewings, they bring me out in a cold sweat.
I don’t blame the GP who made the initial misdiagnosis, nor the subsequent doctors for not challenging it. It appears medical knowledge about cluster headaches was, until only very recently, largely restricted to specialists. The online forums are full of people recounting misdiagnoses of sinusitis and migraine.
I’ve been free of this for five years now, and have no idea if and when I’ll get another episode. But I know if I do, it should only last for a few weeks. Whilst I’ve suffered this over many years, I think of myself as being extremely fortunate. As an episodic sufferer, with increasingly long remission periods, my experience is insignificant compared to chronic sufferers. I cannot even begin to imagine how they manage to live with this debilitating condition on a daily basis. I only hope that the shared advice and discussion that is evident on the web provides at least some support.
Reference
Mager, A. (2009). Mediated health: sociotechnical practices of providing and using online health information. New Media & Society, 11(7), 1123-1142.
December 11th, 2010 at 2:20 pm
very interesting contribution to the debate on online health information and its empowering potential! thanks also for the mention 🙂
if you or other readers are interested in my work, you could also download my thesis “mediated knowledge” here:
http://visp.machfeld.net/astrid/?page_id=4
good luck with your headaches!
December 11th, 2010 at 2:52 pm
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December 11th, 2010 at 3:26 pm
Thanks for the link Astrid. Glad to contribute in a small way to this interesting area of study.
December 13th, 2010 at 4:50 pm
What is interesting about mediated diagnosis is that the role of the healthcare providers change. It used to be (my parents’ generation) no questions were asked about the condition, treatment, or alternatives. Everything was left up to the doctor who was perceived as being the “expert” and therefore, would know everything. Now the good doctors also use the internet and they are the first to admit that they may not know everything. Those that are more arrogant than good, will dismiss a patient. But the patient has other resources that they can then bring back to the doctor (this is what I felt like when I had my headache, my headaches come in waves, etc…).
This also has been useful in finding people that suffer from similar rare diseases. While one person who has a rare disease may not be able to do much, families of 200 sufferers of the same disease can pool their resources, informing not only those that have the disease but their doctors. That has happened to a local family who have been able to use the internet to find others that have the disease and create a community that is now working with researchers to find a cure. They have been very effective using social networking sites, but also YouTube. The community is scattered throughout the world and always doctors in other locations to access information that would help in treatment and diagnosis. Doctors today, therefore, need to be prepared to research the latest data, answer questions from patients who are much more informed, and understand that they may be required to give a variety of treatment options (or even diagnosis options).
December 14th, 2010 at 11:33 am
Virginia, it’s interesting how the mediated health contexts discussed here relate to wider socio-cultural aspects of web interaction – shift from ‘expert’ knowledge to more democratic and participatory sources (advantages and disadvantages); emergent multimedia / multimodal forms of information; distributed support systems etc.