Why are so many young women suffering from invisible illnesses? | Hacker News Reader

Why are so many young women suffering from invisible illnesses?

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32 pointsfortran7716 comments

There's a lot of conflation and paternalism in this article.

I get the TikTok tics being socially motivated and reinforced. Expanding that to include social reinforcement of being Fair Ophelia... fine, that can be a subset.

The wide sweeps this article makes at people trying to deal with a chronic condition, especially ones where the symptoms are not immediately visible (pain, fatigue, nausea)... that's one of the reasons why women rarely get diagnosed as quickly and have worse health outcomes [0].

The core root here is sick people, mainly women and girls, being unable to get medical help that actually helps. This leads to seeking social support elsewhere, which then reinforces bad cycles.

Moving the blame to the sick people, instead of the medical system which can't help them, is not great.

--- [0] https://www.npr.org/sections/health-shots/2018/03/27/5971591...

Thanks for this. I wish there was more empathy, respect for the suffering of others, as diffuse, hardly-visible or 'lazy' it might sound. For a start. The medical diagnostics, discoveries, treatment or cures may take time to appear, but the default should be: so, you're in pain, I believe you.

Yes some people will abuse your empathy, or seek attention through simulated pain, but that's also something we should strive to take care and cure.

The default should be 'I believe you're in pain, let's see what we can do for you'. Maybe this is first-world idealistic, maybe religious-rooted I don't know, but it is a horrible experience where you fear talking about your pain because you'll be judged, shunned, rejected, mocked, blamed.

> where you fear talking about your pain because you'll be judged, shunned, rejected, mocked, blamed

This really strikes to the heart of it. If the outcome of a fifteen minute appointment I’ve waited nine months for will determine whether I’m going to receive a diagnosis that _might_ lead to a better outcome, there’s no way I’m not going to do a lot of research to make that appointment go well.

And then there’s no way that anxiety won’t be monetized in some way.

We need doctors to be able to be compassionate people working towards the best solution, instead of trying to pigeon hole diagnosis codes for vague, protracted illnesses so insurance companies will allow them to continue working.

Ok, this article makes me enraged.

Ten percent of women have endometriosis. That's 15 million people in the US. The typical wait time to diagnosis? DECADES.

Most of the folks I know with Ehlers-Danlos didn't get diagnosed till their 30s or later.

A company just came out with a working blood test for Long Covid....but right now, today, there are a bunch of doctors telling sufferers that "they seem depressed."

The HUGE problem in America is that women's diseases are underdiagnosed, underfunded, and psychologized. The number of people I know who were told they were depressed before they were diagnosed with serious diseases is legion.

A much MUCH MUCH smaller problem is that perhaps some people develop mental health issues around sickness identity.

Do those patients need to be treated? Absolutely. Is writing This Particular Article Right Now, while up to 4 million people are newly-disabled with Long Covid and struggling to get doctors to take them seriously, Maybe Not The Best Timing? Maybe Incredibly Irresponsible, Given What's Going On?

Read the room.

How do you come to the conclusion that mental health issues around sickness identity is a smaller problem than underdiagnosed (physical) diseases? Could you point to some statistics? Personally I do not know many people who were told of being depressed which were later diagnosed with a physical disease. Could you please give some examples?

I don't think it's a women vs men issue but rather medical system just sucks and men biology is somewhat simple relatively speaking but men are also suffering from low testosterone, hair loss, ed, brain fog, low energy, and more and all doctors just say your cholesterol is good are you depressed?

Isn't breast cancer the cause that gets the highest amount of donations?

The problem is called co-rumination. It's engaged in more often by adolescent girls than adolescent boys, and far more often in adolescent girls it leads to anxiety and depression. They bond over the sharing of (and obsession with) one another's problems and often, through a mimetic process, take on one another's problems. Social media is a superhighway for this kind of communication, and exacerbates the pathological tendencies of it. Notice how the intervention of taking away the young lady's phone was a crucial first step in her recovery.

> They bond over the sharing of (and obsession with) one another's problems and often, through a mimetic process, take on one another's problems.

Nice to be able to put a name to this phenomenon.

From my own observations, I suspect this is less a bonding ritual and more a competitive one. The responding party establishes common ground but usually tries to outdo the initiator-- "I have the same thing, but mine's worse."

There's a name for that too - the "Suffering Olympics".

And that is itself a subtype of a more general syndrome, which depending on how you approach it is either "go there ism" or "been there ism."

And it amounts to this: "I've been somewhere you haven't been, ( over some domain in which we both have a reputational interest), and therefore I am the default authority in this domain. Since I've been there and you haven't this authority can't be challenged."

The "go there ism' version is the same model applied prescriptively, " I'm capable of going to, and withstanding the strain of, a place of such extraordinary suffering/bravery/ compassion/violence, that you cannot go without my help/'teaching'/strength etc."

Trying to challenge the validity of either of these positions inevitably leads to accusations of trying to attack the person personally, which then goes to somewhere between "I'm tired of having this conversation" and a gunshot, depending on who you're dealing with.

It's how people who actively disavow social hierarchies establish social hierarchies.

So it’s like a form of munchausen?

Yeah, I'm no psychologist, but I thought the same thing. It seems related.

I think its mainly a mix of two factors.

One factor is that many young people today suffer from what Durkheim called "anomie" (social instability resulting from a breakdown of standards and values) on a personal level. They feel rudderless, lost and hopeless about the future (economically, environmentally, politically). These feelings manifest themselves as a what they perceive as a physical ailment. Though no tangible, physical symptoms exist this malady feels very real to the suffering young person.

The other is the social factor. Social contagion leads young people to take their cues from other young people, many of whom suffer from similar issues. They are encouraged from their peers across social media to embrace their condition (there's no shame in being sick!). In addition to this encouragement, having an illness or a disability grants an individual a certain amount of status in the grievance culture that is currently en vogue among large swathes of the population (very similar to being part of a "marginalized group"). It creates a feeling of belonging and acceptance by others who also suffer from these invisible maladies - a feeling of belonging and acceptance that is often never otherwise found in the lives of these young people.

I wonder how much of this is associated to technology overuse and information overload.

I can only think of WebMD but on steroids with thousands of videos and blogs of anecdotal evidence convincing people they have illnesses they would not previously have considered. Add on the addition of likes and engagement on those things to then convince yourself further.

It is rather upsetting to think that this can be the outcome of our mental health at an all time low or our medical systems not being able to actually practice medicine anymore.

The amount of co-rumination and associating internal symptoms with named conditions is the most interesting thing to think about. Are we making ourselves sick doing this? Or does overly talking/sharing these symptoms and conditions actually improve them?

"classic-like" Ehlers-Danlos is triggered by misregulated tenascin-X. Tenascin-X is very close to major histocompatibility complex II, a TRPV receptor, heat shock proteins, and more. Also in the same region as TNF-alpha.

Chromosome 6, region p21.3 is chock-full of interesting genes.

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