Maybe It’s Lyme What happens when illness becomes an identity? (2019) The cut - Molly Fischer

https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html

This is a very long read and I've only skimmed through, but this is a topic I hoped someone would write about. From the comments it seems the article could be somewhat dismissive to patients.

This doesn't just apply to Lyme disease. We've seen a rise in patients 'owning' their disability and/or illnesses over the past decade - particularly in the chronic illness community. This is most visible on social media where illness bloggers and members of the community have a huge following based on their illness(es) and 'journey'.

While this may seem positive on the surface, I do worry about the role of identity politics in the chronic illness community. There seems to be a significant overlap. So many define themselves by their diagnoses, and their personal experience becomes the most important story. I guess this is just a natural reaction to wanting to be taken seriously and for it to be known just much these illnesses can dominate someone's whole being: "You say I'm well, but actually I'm sick"...

 

I saw this the day it came out. It is a darkly insinuating and unfortunate piece. I thought it curious that it seems part of a barrage of similar patient-dismissive opinion articles that coincided with the release of the new IDSA Lyme Guidelines draft.

 

I've seen illness identity expressed with tattoos. I find it a bit disturbing.

 

I think you may be taking your eye off the ball, which is what I suspect is the desired response, and is all the more disturbing.

This article seems little more than pureed patient-bashing. Feels awfully like gaslighting to me - and the ME/CFS community should be appalled at that if only because it's been on the receiving end big time.

Illness identity - just another made-to-order psych construct that deflects from a diseased community.

 

This 'disability pride' & identity sort of stuff is common amongst disabled and chronically ill people in my generation (I was born in the 90s). The reason behind it is they want to push back against the idea that disabled/sick bodies are worth less than able/healthy bodies. They don't want to be ill, but they want to show that they have accepted who they are and are proud of who they are. It's like a reclaiming thing - make your disability/illness a part of your identity of which you are proud, rather than it reducing your worth.

In my perception these people are not necessarily attached to particular diagnoses. They just want to be accepted and celebrated for who they are rather than feel as though they are 'less than'.

 

Yeah, a similar (and crappy) article could easily be written about the ME/CFS community.

 

@Sarah94 ah ok, thanks for your perspective. Mine was a little different. From what I've been observing on twitter came across to me as attention seeking, but of course it does not apply to everyone. Twitter is such a weird place.

 

this is essentially what I was getting at. there are so many who are marginalised from mainstream society and they can become very bitter, defensive, and genuinely unable to have a normal conversation. This really isn't helpful to anyone. Perhaps we just see the worst sides on social media.

 

yes, the lena dunham tattoo ("sick" written on her neck) is shown in this article.

 

It's funny how the 'expert' in that article is a historian, not a medical scientist...

I don't believe in "chronic lyme", but patients do have a severe chronic illness that could well have been triggered by an initial infection of borreliosis. (interestingly enough, the word borreliosis or Borrelia isn't mentioned in the article at all).

Robert Aronowitz did write this doozy editorial back in 1991
"The trouble with chronic fatigue"
https://www.ncbi.nlm.nih.gov/pubmed/1819250

 

Do you believe in late stage Lyme refractory to treatment?

 

What do you mean by that? There is no evidence that antibiotic-refractory Lyme arthritis is due to chronic borreliosis, but instead some other chronic consequence of the initial infection.

 

I mean late stage Lyme disease that does not respond to treatment. Check the last installment of the IDSA Lyme guidelines. Check case studies of people like Vicki Logan or Neil Spector - there are many, many individuals who were treated for Lyme and remained sick with Lyme, whose diagnosis was confirmed via culture.

Sure there is. Most of the recent evidence that's been published in the last five years suggest persistence. Check out publications from Johns Hopkins and Northeastern and Tulane....

Even Steere's most recent foray into the "Bb remnants" theory can be interpreted as continued infection, and that is pretty much his whole schtick these days, ie Lyme arthritis.

 

I feel that 'chronic lyme disease' is caused by internet exposure. It will continue to be contagious as long as social media is alive.

 

Odd, because its reports predate the Internet, just like ME.

 

Chronic brucellosis existed before social media, until it was "disproved" in 1959. It is interesting to see that the defence used by science had previously been tried. Reports that the Atomic Energy Commission used almost the same method in the 1940s seem plausible but require further checking.

A secret AEC document dated April 17, 1947, titled Medical Experiments in Humans stated: "It is desired that no document be released which refers to experiments with humans that might have an adverse reaction on public opinion or result in legal suits. Documents covering such fieldwork should be classified Secret."[63]

At the same time, the Public Health Service was instructed to tell citizens downwind from bomb tests that the increases in cancers were due to neurosis, and that women with radiation sickness, hair loss, and burned skin were suffering from "housewife syndrome".[63]

https://en.wikipedia.org/wiki/Uneth..._United_States#cite_ref-goliszek-130-131_62-0

 

@duncan I believe 'chronic lyme disease' was once referred to as meningoencephalitis? When did the name change?

ME is not an ongoing viral infection, it is the result of an 'injury', no?

 

This is simply one manifestation. There is also Lyme Encephalomyelits, for instance. There is Lyme encephelopathy. There is Lyme arthitis. There is Lyme carditis. That these entities exist is not disputed by anyone. The literature is awash in Bb infectious states. Lyme can affect many different organs, different tissues. This has been demonstrated in mice, in primates, in humans. It has been demonstrated that it can persist, too, after treatments, and done so in vitro and in primates and in humans.

We don't know yet that ME "is not an ongoing viral infection." It may be. It may be an immune disorder. It may be something else. Point is, we don't know yet.

 

Y'know, that's pretty similar to things that Simon Wessely has said about ME...

 

When does "chronic" start? How long do you have to have it before it is "chronic"? Does "chronic" mean "long term" or "without resolution post "appropriate" treatment" Who has decided which meaning it has? Is a given use internationally accepted and (unlike "illness vs disease" translatable without absurdity or tautology? What is "appropriate" treatment after which borreliosis is allegedly resolved?
How do we know it is resolved given even e-m case can present with negative serologies? (False positives are also a problem, of course)
There are plenty of advocates of both chronic Lyme and post Lyme owing to post infectious phenomena according to case.