On the one hand, the observer is presenting unreliable information, but on the other hand sufferers from this condition are generally unresponsive to correction.
Probably the best way forward is for iNaturalist identifiers (especially of insects and potentially parasitic invertebrates) to be aware of the condition and disengage quickly from observations that seem to reflect it. Maybe after tagging it as âlifeâ and âas good as it can beâ ?
It would be great if there were a standard policy that was as polite and humane as possible without endorsing errors or requiring great effort.
I donât know, but I am glad you have asked the question. I have a relative who likely has this condition, and it is virtually impossible to know what to do to help. I think the first step of bringing this awful syndrome to wider attention is a good one.
I remember reading a very thoughtful article on this some time ago, but canât find it now. I havenât come across observations on iNaturalist that seem to reflect this condition but I would be very wary of engaging with them. Anything that reinforces the personâs belief (if it is really delusional) is likely harmful, and anything that goes against it can reinforce their belief that nobody is taking their condition seriously or understands what they are going through.
[Update: my text edited because itâs a bit more nuanced than that - better to read the short, open-access article linked below by bugbaer]
Was this the article you were thinking of: https://academic.oup.com/ae/article/70/1/44/7633252? It was mainly focusing on experiences of people working in entomology identification labs that include public extension services, so their interactions with these cases are much more direct than coming across an observation on iNat.
They do say that
To begin, it is not necessary to dismiss the claims completely for fear that you are âencouragingâ a severe delusion or mental illness in some way.
and
Some individuals might only have spurious grounds for believing that they are infested with a parasite. Nevertheless, [Ritunnano and Bortolotti (2022)](javascript:;) argue against dismissing these kinds of implausible claims as completely incomprehensible, arguing that instead we should try to see them as that personâs best attempt to make sense of the world around them and to imbue their experiences with meaning.
DP is definitely best left for medical doctors and medical entomologists to figure out. I would personally not engage in an observation that seemed clearly related to DP, though I see how that could leave room for other, potentially less-friendly, identifiers to come along and make a mess of it.
A few things to consider: while DP symptoms are usually just delusions, there are some times when a person has, say, nymphal ticks from their pets or tropical mites raining down from birds in their roof, and they really do have some sort of infestation in their home or on their body. (A good rule of thumb is that if the DP symptoms only happen in a specific location or at a specific time, there is a decent chance it isnât actually DP.) Just saying that to echo what others have already said and encourage identifiers to be kind and not act like a know-it-all in cases where someone seems to be delusionalâyou may end up learning something you didnât know.
I tend to believe the best method is, if you donât know and donât have any useful IDs, to just skip the observation and let someone who knows more than I do react to it. I do this with all types of observations.
Even if the symptoms are not dependent on time and place the infestation could be on their body
I would not attempt to interact with such obs except to advise the person to see a doctor, and disagree back to life if the observer IDed it as an insect that I know that is not parasitic. I am not a doctor and am not qualified to distinguish between infectious and psychiatric conditions
I havenât come across it too much but in the few instances where I have, I politely explained to them that if they have any health or medical questions or concerns then iNaturalist is not the place for those and they need to see a medical professional. That seems to have worked.
Right, I have seen professional psychiatrists specifically say that that attitude leads to medical errors. For example they see someone checked into a psych ward for insisting they have âspiders in their earsâ, and, despite having been in a hospital for hours, until they got to the psych ward no one had even bothered to check if there was some kind of arthropod in their ears and, in fact, there was.
Even if there isnât, patients are unlikely to take a provider seriously when they say there isnât anything there if the provider has not done anything to check.
Are there a lot of those posts? Iâve searched a few human parasites on iNat and the majority of them seemed legit. I guess the delusional ones probably get bumped to âlifeâ pretty quickly though.
I wasnât aware DP was a medically recognized condition or that it might in some way intersect with iNat or entomology. The article from @bugbaer is very good. Always good to learn something new, which is why I like this forum.
Thank you for sharing the article! Itâs a fascinating subject for anyone interested in professional ethics, and I especially appreciated how the writers talk about the value of this work. That doesnât mean everyone is equipped to do it, but respecting the basic value, integrity, and humanity of people with mental health conditions is so important.
I am not an entomologist, nor do I know enough to be helpful in actually identifying potential parasites, but it seems to me that the approach most consistent with the advice of this article would be to evaluate observations based on the evidence, like usual, and respond to the observer kindly, also like usual. And encourage them to get help elsewhere with things that are outside the scope of this platform.
The article reports that in the personal experience of one of the authors, something like 1/3 of cases have evidence of insect parasites! Of course there are nuances, and one personâs experience is one personâs experience, but it does not surprise me in the slightest that there would be some medical professionals, alas, who assume itâs a mental health condition without bothering to check. (âŚjust ask anyone who has had their physical health problems dismissed as âanxietyâ.)
I live in an area where Strongyloides is endemic. The usual way it is picked up is by seeing a low calcium and high phosphate result in conjunction with an eosinophila and, sometimes, anaemia. This then leads to actually doing strongyloides serology. A high index of suspicion is required. It is often impossible to see the tracks with patients with very dark skin.
Substance Use Disorders are also associated with parasitosis symptoms.
Interestingly the first antipsychotics were derived from anti-helminthic agents. Test-tube experiments with first generation anti-psychotics will kill off parasites. I wish someone would do similar studies with more recent antipsychotics because I would love to know if the depot antipsychotics that are given to our patients with psychosis are impacting on the strongyloides rate.
This is a complicated subject, and while I absolutely and unreservedly support the advice of seeing professional medical attention, in my experience the medical community is not terribly good with either real or delusional issues of parasitism.
As a concrete example, I and one of my now ex-girlfriends had been working in remote portions of the Amazon and Andes for about a year. She contracted leishmaniasis while there and received treatment on site, but mine didnât show up until I was back in the US.
I knew right away what I had, but the US medical community was completely unprepared to deal with it, and the first medical processional I approached immediately assumed I was a âtweakerâ because, âLots of tweakers think âbugsâ are crawling under their skin.â
It took me more than a month, a lot of doctors, and a ton of money until I finally found someone who new what they were doing, an immigrant Chilean doctor who had worked in the Peruvian Andes and who instantly recognized the leishmaniasis for what it was, understood that I knew what I was talking about, and could prescribe a course of treatment (less effective, massively more expensive, much more time consuming, and far more dangerous than what was used in South America or for the US military, but hey, US healthâcareâ system at work).
Similarly, I have a lot of friends who have contracted lyme disease on the East Coast of the US and similar nightmare stories about doctors being extremely bad about diagnosis and treatment.
The correct thing to do is to consult a doctor, but, depending on the issue (and the country), it may take a long while to actually find a doctor who knows what the f*** they are doing.
I agree that this can be an issue, though I have had good luck in a similar situation, so I share my experience to encourage people to at least try the route of presenting symptoms and evidence to the doc.
I presented with Lyme in a part of the country where Lyme is not endemic and before the disease had received at lot of the press/attention that it has now. I had contracted it while visiting home, which at that time had one of the highest rates of Lyme incidence in the US, so doctors there were very familiar with it, but this was not the case elsewhere. I gathered documentation of my symptoms and travel history, and went to the doc (who I had never met before, they were at a health center). I explained my symptoms and reasoning for why I thought it was Lyme, and they made a call and looked some info up, since they hadnât encountered Lyme before. It probably helped that my symptoms were fairly âclassicâ, but they agreed with me pretty quickly and prescribed the usual doxy course (it probably helped that the treatment is widely available, cheap, and not very likely to cause issues).
So I think the response really depends on what doctor you can go to and whether you can present some evidence in a calm manner. Today, docs are under lots of pressure to treat patients and make decisions in an office visit very quickly (why some docs are leaving the field or retiring early). They have to justify the tests or treatments they order to their hospital/clinic and insurance companies, which makes it hard to jump to the comparatively rarer/strange diagnosis quickly. They also do encounter patients frequently who either a) have read something online and think they have something very rare (when itâs much more likely something common) or b) have a mental health issue that leads to them self-diagnosing incorrectly. So from that perspective, a doc coming across a strange case is going to be more likely to work from the starting point that that patientâs condition is the more common one, and try to treat/eliminate possibilities from there.
I do think docs can often do a better job listening to patients, but they also have a tough job with all the different potential conditions out there, especially if it is a condition that they encounter rarely/never in practice.
In the case of observerâs asking about parasitosis, I agree that a comment encouraging them to go to a doctor is a good one, and Iâd add that they should take any evidence with them that they can supporting their diagnosis. It can help the doc justify why they are proceeding with testing/treatment for a comparatively rare condition. Whether the observer is infected with a parasite or they have DP, a doc is probably going to be one of the people who can actually either get them treatment or get them to someone who can treat them.
I do recall an instance where someone on iNat appeard to have this, and was posting unpleasant pictures of their feces thinking there was a lobster-like life form in it. if there was, it definitely wasnât visible from the photos. Arguing with them definitely wasnât helping. I hope they eventually found help for their condition, whatever it was. One of the failings of âwesternâ medicine, in my opinion, is that it does too much to separate mental and physical health. if someone is certain they have parasites and experience the effects of parasites mentally (maybe functional neurological disorder or something), this is as problematic as if they have real parasites, except for it not being contagious. It still needs attention and treatment, and the patients deserve that instead of stigma. But in terms of iNat, those sort of things donât fit here at all.
I have this condition (it flares up pretty bad occasionally but not all the time) and honestly Iâd probably just skip the observations, or suggest seeing a doctor as others have suggested.
Trying to tell the person that theyâre wrong might do more harm than good, but simply saying âI canât see any evidence of a parasite in this image, but see a doctor if you have concernsâ doesnât reinforce the delusion, but also doesnât completely dismiss them.
That being said, this is an excellent point:
A lot of doctors donât know how to handle psychosis properly, and itâs also really not uncommon for them to dismiss patientsâ concerns, especially if the patient insists they have a specific condition. Iâve been dismissed more times than I can count only to finally get tests later and find out there was something wrong that needed urgent treatment.
This is also such a good point. Having someone try to insist thereâs nothing going on without checking will almost certainly make me more paranoid and double down on the delusional belief, whereas someone checking and saying âI canât see any evidence for this, but I know you must be having a really hard time right nowâ is going to help a lot more with calming me down and reassuring me even if it doesnât get rid of the delusion.
As a side note, itâs really nice seeing people in this thread being compassionate about delusions. Normally when I see people talking about DP and psychosis in general, theyâre a lot less kind, or even outright cruel, and itâs refreshing to see people discussing it in such an understanding way instead of treating people with these conditions like theyâre stupid or something to laugh at
Having recently been involved with a close relativeâs delusions and hallucinations (not DP) caused by underlying medical conditions, I know itâs no joke. One has to be compassionate and recognize that this person is struggling to make sense of their world as best they can. Best wishes to you.