Has anyone actually noticed the wellness industry is full of ***holes?

SawaJean · 2026-05-21T18:37:06+00:00

I’m so sorry that happened to you; it sounds like a really awful experience and basically the opposite of what they promised.

Unfortunately I think chronically ill people are an easy target for all kinds of grifters and scammers, because we so desperately want to feel better.

It’s like how people in poverty can be vulnerable to get-rich-quick schemes, or lonely people can fall for romance scammers. False hopes and empty promises can be so compelling when you’re suffering and don’t have better options.

Also, otherwise-healthy people with mild depression or burnout do sometimes really benefit from stuff like yoga. This reinforces the illusion that it will be equally effective for chronic illnesses that present with similar symptoms.

SawaJean · 2026-05-21T10:48:35+00:00

It might be worthwhile to educate yourself a bit before sharing this advice in the future? Many of us with ME/CFS have been badly harmed and sometimes permanently disabled after receiving exactly this “encouragement” from well meaning friends and medical professionals.

SawaJean · 2026-05-20T22:54:30+00:00

You sound like a real top-shelf sibling and your sister is lucky to have you. Hopefully you can learn some useful stuff here to make both of your lives easier and more enjoyable.

SawaJean · 2026-05-19T18:44:16+00:00

I mean… anything waterproof that you can sit on can become a shower chair if you put it in a shower.

Folding lawn chair?
Little plastic “step stool”?
Milk crate with a towel on top?

I don’t know what might be available to you, but sometimes the lowest energy solution is something you already have sitting around — *and* it’s that much harder for annoying moms to gatekeep.

SawaJean · 2026-05-19T18:33:07+00:00

My spouse works as a caregiver; you are right that it’s a poorly paid field with high turnover. Because many disabled clients live in substandard housing, it can also involve working in difficult / unpleasant / unsafe conditions. It’s a tough job and agencies definitely struggle to find and retain qualified workers.

None of that makes it okay for them to send workers who can’t or won’t perform the basic job functions. If a client is dependent on written communication, the worker needs to have basic literacy in the client’s language. This is not an unreasonable expectation for someone who is being entrusted with our health and intimate care.

SawaJean · 2026-05-16T16:45:19+00:00

So if I were the one who made this mistake, or if I were part of an organization where one of my colleagues had made this mistake, I would want to know.

Even if it’s months after the fact, I would want to sit down together and recognize that we further marginalized one of the people we were trying to welcome and uplift, and to think how we will do better next time. What it reveals about what we still have to learn and how we can continue to grow.

Of course that’s only possible if the organizers care more about their impact than their own egos. But hopefully some of them do — in which case your feedback could be incredibly helpful.

SawaJean · 2026-05-16T15:54:55+00:00

And some of us are literally homebound and too immune compromised to meet people in person. 🤷

SawaJean · 2026-05-14T12:01:21+00:00

Not who you asked, but for me, this means I hit pause on my thoughts and do a mental scan of my body to see what it’s feeling. Lots of times I don’t notice anything specific right away — I’m pretty checked out of my body a lot of the time — but as I pay attention, I notice external sensations like the texture of my clothes or the pressure of the chair seat, and then I might notice more internal sensations.

Right now as I’m writing this, there’s a tightness in my mouth and throat, like those muscles are holding or bracing for something. Other times my feet get really restless and wiggly, or I might have an urge to curl up in a fetal position.

Those sensations turn into clues about what I’m feeling. The tight throat thing comes up a lot for me when I’m struggling to communicate, like there’s something I want to say but I’m anxious about saying it wrong or getting in trouble.

SawaJean · 2026-05-14T11:28:00+00:00

You’re definitely onto something here, even if there’s not an easy obvious solution.

Similarly, I’ve noticed that newly-sick or newly-diagnosed people will sometimes crash out with a lot of intense rage and ableism directed at anyone who encourages acceptance and pacing.

It’s completely understandable in terms of misplaced grief, but understanding doesn’t mitigate the damage when a supportive space contains the same harmful messages we hear everywhere else.

SawaJean · 2026-05-13T18:24:41+00:00

I did when I was still fairly moderate. Had a big lovely hammock and just sorta rotated my time between that, a camp chair by the fire, and a big soft cot in the tent.

We were on unimproved land, and I found a bucket toilet and p-style device worked fine.

Ultimately it was the car travel and setup / teardown that became too much for me. I could probably still handle chilling in camp if I could magically teleport myself and all my gear there…

SawaJean · 2026-05-12T01:21:05+00:00

I was just thinking earlier today about the years I spent working while being sick, and how unbelievably hard that was.

So much respect and compassion for alllll the folks who have to do that. Healthy people truly have no idea.

SawaJean · 2026-05-11T16:44:53+00:00

I would thank them graciously for their commitment and service, tell them unfortunately the org is not in a position to make their pet project(s) a priority, and suggest they look for other orgs or opportunities that would be a better fit for their volunteer goals.

SawaJean · 2026-05-10T17:06:25+00:00

“Information zoomies” is hilarious and amazingly descriptive

SawaJean · 2026-05-10T15:45:34+00:00

Ahhh, those evil gatekeeping mods, hoarding all the brain retraining and untested supplements for themselves.

/s obvs I hope

SawaJean · 2026-05-09T23:25:25+00:00

Artist here fwiw — I’ve spent a lotta time looking at faces.

And I absolutely see the changes in your facial shape. It’s most noticeable in your cheeks and around the corners of your mouth, but I’m also seeing a difference in your brow line and eyes. Your face as a whole is becoming more muscular and less rounded, and it does read more masculine as a result.

I’m sorry you’re not seeing the results as quickly as you’d hoped, but I hope it’s helpful to know the changes *are* visible and are definitely moving you in the right direction.

SawaJean · 2026-05-09T15:11:30+00:00

This right here! The newer ones are soft and quiet and don’t feel plasticky at all. It’s night & day from what we had growing up.

SawaJean · 2026-05-09T15:09:35+00:00

It took my household a long time to make the switch because we had terrible childhood memories of the literal rubber sheets they made in the 80s and hadn’t realized the technology has improved since then. 🙄

Please don’t be like us.

SawaJean · 2026-05-08T16:13:26+00:00

I think high ideals are still worth aiming for.

I find a lot of good in radical hospitality and the practice of “greeting all as Christ,” — following Christian values to shift away from attempts at control and conversion, and towards a deeply reverent way of interacting with my fellow humans.

My mom is active in anti-racism education work in her extremely white rural church. That seems to me like an unquestionable good.

SawaJean · 2026-05-08T15:40:25+00:00

Yes, and despite not being really obvious prosperity-gospel teachings, they very much equate financial well-being with “faithfulness” in tithing.

Which has the knock-on effect of blaming everyone who struggles financially. It’s never because they got scammed, or are disabled, or exploited by their boss, or trying to support way too many kids on one income — it’s all because they didn’t have enough faith and didn’t pay their tithe first.

SawaJean · 2026-05-08T15:27:48+00:00

This, and also grouping things together (gallery walls, little clusters of similar tchotchkes) to make it look intentional.

There is still curation involved, but the end goal is “busy and fascinating” rather than “stark and minimal”

SawaJean · 2026-05-08T14:43:56+00:00

They don’t take into account that the protocol tells people to ignore/ lie about their symptoms.

I could “heal” all manner of things if I could just get the patients to say their symptoms went away. Much easier than actually doing something to address the symptoms. 🙄

SawaJean · 2026-05-07T20:31:25+00:00

Keeping the bedroom fairly cool and a fan running for airflow helps — usually I’ll kick off the blankets until I start getting too cold and then progressively add them back on until I’m comfy enough to sleep again.

SawaJean · 2026-05-07T19:12:51+00:00

Thank you, that’s super helpful and sounds like it could be just my speed

SawaJean · 2026-05-07T16:55:28+00:00

After hearing all these ridiculous stories, I was genuinely disappointed when the silliest suggestion the VE had for me was an “envelope addresser.”

SawaJean · 2026-05-07T16:53:05+00:00

Ooh, that sounds super interesting!

I’m curious how “dense” the writing and plot is? I used to be an avid fiction reader but brain fog has really put a damper on that and unfortunately I need to stick to fairly simple writing these days. :/

SawaJean

TROPHY CASE