this post was submitted on 08 Oct 2024
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Background:

As some of you know and are probably tired of hearing about it, I have been dealing with a weird medical condition for over a year now where I have been unable to eat solid food. It's been a mystery to doctors, even to the Mayo Clinic, but we keep working on ideas.

The most recent theory is that it is something called ARFID, which stands for Avoidant/Restricted Food Intake Disorder. It's an eating disorder, but not one that has to do with any sort of body image issues. It can be induced by trauma and I did have a really traumatic experience involving kidney stones and another mess with the medical system where I ended up lying in an ER bed for 6 hours after lying on a clinic floor for 4 hours before anyone gave me any painkillers about a month before everything started, so the current thinking is that is what triggered the ARFID.

https://en.wikipedia.org/wiki/Avoidant/restrictive_food_intake_disorder

Now, I'm working with an eating disorder clinic. I have a psychiatrist and a nutritionist I'm working with there. I haven't made too much progress yet, but it's early days.

Rant time:

So… the psychiatrist says I’m supposed to find an occupational therapist to deal with the ARFID. She gave me two names. One said they don't actually deal with that sort of condition and the other wasn't taking new patients.

So I've been looking myself calling around for one myself and all of the ones around me say that I need an occupational therapist that works with eating disorders. Cool. I'll search that big interconnected web of computers full of information about everything and find one of those.

I CAN’T FIND ONE OCCUPATIONAL THERAPIST THAT CAN WORK WITH ME WITHIN A TWO-HOUR DRIVE!

And you know what both Google and Bing telling me when I search for occupational therapists who treat eating disorders? They're telling me occupational therapy is helpful for those with eating disorders. Lots of websites talking about how helpful it is! Thanks a whole fucking lot!

There are websites that help you search for occupational therapists. There are websites that help you search for people who treat eating disorders. THERE'S NO FUCKING WEBSITE THAT HELPS YOU SEARCH FOR OCCUPATIONAL THERAPISTS THAT TREAT EATING DISORDERS!

I know I'm not in New York or L.A. I'm in Indiana. But Indianapolis isn't exactly a tiny burg and it's only 60-90 minutes away depending on where I'm going. There's lots of doctors, hospitals, etc. There are also several small cities not that far away in both Indiana and Illinois (I'm on the border) including the one I'm in. College towns with big hospitals and lots of medical facilities. So you'd think they'd have someone.

Nope.

The only ones I find that do work with eating issues are pediatric, and I'm guessing they're not too keen on 47-year-olds.

So now I'm expanding the search to see if anyone will do anything via telehealth and hoping that the psychiatrist will respond to my email in a timely manner, but I know she's super busy just based on how far apart the telehealth meetings I'm doing with her are.

I hate this so much!

FYI- an occupational therapist is not the same as a licensed social worker. They have a degree in occupational therapy. https://college.mayo.edu/academics/explore-health-care-careers/careers-a-z/occupational-therapist/

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[–] salvaria@lemmy.blahaj.zone 5 points 1 month ago (1 children)

Hi Squid, I've come across your story before and it's stuck with me - hope your "transition to solid food" eating plan is coming along! I'm sure you've searched this all to hell, but I took a look and found this "find treatment" page on the National Eating Disorders Association's website and also this "find treatment" page on the Alliance for Eating Disorder's site. I apologize if you're already seen these, but I thought it might be a good resource for someone else dealing with something similar. Wishing you the best!

[–] FlyingSquid@lemmy.world 3 points 1 month ago

I have seen those, thanks. But I hope they help others. Thank you!