Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[Wits_End]

What about

"First-line treatment for these patients is pacing, which is the art of staying within the energy envelope in order to avoid post-exertional malaise. Repeated triggering of post-exertional malaise can and often does lead to worsened physical functioning over time. At worst, these patients end up bed-bound, unable to eat, and require enteral nutritional support, as well as 24-hour caregiver support. It's a really horrendous disease.

I'm actually writing a book on the subject and offering peer-to-peer consultation support, because most of these patients go without diagnosis or treatment. Thank you so much for your curiosity and interest in these patients. They're a fantastic group to treat once you know what you're doing."?

 

[Yann04]

TW: Suicide

A post about a woman with LC in Canada who committed suicide. Says psychologisation/dismissal contributed.

 

[Chandelier]

Well articulated reddit post.
A young woman in despair about the insinuation that she would seek disability as an identity as if it was a fancy pair of new shoes to show off with on social media.

Recently I've seen a few forums of medical professionals discussing the rise in younger queer people who believe they have disorders like ME/CFS, POTS, hEDS, GP, and MCAS.
The common consensus was that these individuals have taken on disability as an identity, and are unwilling to accept a different diagnosis/phycological explanation for their symptoms.

As a 19 year old masculine presenting women idk what to do about this.
Last year I was a high achieving biomed student studying to become an OT, no history of serious mental health problems.
Now (because of the symptoms I am experiencing) I am basically nothing.
Evey doctor I have seen has suggested I have some sort of mental illness/am not really sick.
The worst time, I had a doctor listen to me explain I had physical and cognitive symptoms so bad I had to DROP OUT OF SCHOOL and without any further questions or investigation told me there's nothing medically wrong with me and I need to start pushing through my pain more.
Genuinly told me I seem too emotionally invested in this situation, which was clouding my judgment. THANKFULLY I was told by a mental health professional that I don't seem like I have any mental health conditions, only deppresion form my situation (although I've seen doctors say mental health professionals are unreliable yes-mans).

When I go to appointments try to present less queer and bring up the "respectable" life I had before becoming sick.
I try to bring up I am not shopping for a specific diagnosis, just want to be well enough to keep going to school/working/living alone.
It's just fucking crazy to me I have to deal with blatant homophobia and sexism while I am ill. It has COMPLETELY changed my perception of the healthcare system.

TLDR: Doctors don't blame womens health issues on anxiety challenge (impossible)

 

[Chandelier]

Beautiful post on reddit:

The parts that no one wants to see​

When you've become the parts that no one wants to see, when your very existence reminds others of their own fragility, when your lack of strength and productivity tickles the fear that one day their bodies too will decay, one day we all will die,

they will need to look away.

But you know what? It's not because dying is ugly. It's not because your body, too thin one day, too bloated another, is truly the root of their discomfort.

It's because so many in our western culture do pretty much everything we can to avoid facing impermanence and the fact that our lives will come to an end.

The parts that no one wants to see, need to stay hidden from reality, so people can continue to believe they're in control.

I sympathise deeply.

And still, it's so valuable to be seen.

We weren't designed for isolation.

 

[SNT Gatchaman]

According to them, pacing is a “self-management program,” and if I am able to carry it out myself, then I do not require any care services.

Because I would once again have to explain ME/CFS from scratch to someone who has no idea what it actually involves, including the fact that “training” is often not appropriate. So it gets labelled as “refusal of therapy.”

You were denied an electric wheelchair because you had cognitive improvement? Do they expect you to walk with your mind??

I wasn't specific enough about how often I have a crash. For one question I mentioned that all my symptoms were worse in winter and when the weather was bad, so my official denial letter said they couldn't help me because "they can't control the weather."

I was told I couldn't be disabled because I have a degree.... which I got before I became unwell.

It reminds me of how I've been told by like 3 different medical professionals that I couldn't possibly have mental health issues or be autistic because I'm in a long term relationship

Different person:

I "don't have brain fog" because I have a degree... which I earned nearly 3 decades ago.

Not me but a close friend, she got denied disability because she could still spontaneously recover.

Haha yeah, my benefits are also always limited to 12 months because apparently this illness is 'new and unknown' and it might just be gone next year. Sure.

I apparently "looked well", was "a healthy, average weight" and was "well presented" in my PIP interview.

Denied benefits because my medical records stated I was “casually dressed” for my doctor’s appointment.

-You're under 65

-Your countertops aren't sticky

It's not on the list. As in, there is a literal list of diagnoses that determine if and how much you get paid for your disability. Actual impact on you is irrelevant.

So exactly zero people in my country get disability benefits for ME/CFS.

"ME/CFS is not classed as a disability in New Zealand."

That I could work as a programmer because I could sit. Nevermind that I couldn't sit for a full day. Or that my mind wouldn't function for more than an hour. And I wasn't capable of doing what my job required. They essentially claimed that some company would pay me to sit in a chair.

Since my job was sedentary the only requirement for being able to work full time is apparently that I am able to sit in a chair some of the time.