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/
I got referred to an adult Autism specialist after years of being misdiagnosed and incorrectly medicated for all sorts of medical/mental disorders.
Told my family about it.
They decided I was actually schizophrenic and attempted to commit me to an asylum in the middle of nowhere.
Packed up my stuff into my car and left, but my car got stolen and I ended up homeless.
Almost two years later, I’m now in a different state halfway across the country, and I get an email stating that my Autism specialist is finally ready to see me, in person only.
Very neat!
That really sucks. I’m sorry to hear it.
The more ironic part is that I lost my job as a data analyst/database manager for a nonprofit helping the homeless, due to… becoming homeless.
Life can be a real kick in the nuts.
For a while, I had no working money or data plan, but did manage to get the Fallout New Vegas soundtrack onto a barely working phone…
Got literally kicked in the head a number of times
You could say I’ve also got Heartaches by the Number.
Might sound stupid but this shit kept me sane.
Figured out I’ve actually got quite a good baritone singing voice as well.
I’ve seen some of your posts before and, my goodness, it’s like the healthcare system is actively trying to do whatever it can to fuck you. I am so sorry. It isn’t much, but I’m sending hope and positive thoughts your way.
It sure feels that way to me sometimes too. Thanks.
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.
It might be worth calling and talking to them anyway? Someone might take up your case, or be able to give you a lead on another OT person to contact.
My offer to send you pizza (or personally deliver it) still stands, whenever you’re ready for it.
Possibly. I am actually working with an eating disorder clinic that is part of a children’s hospital but treats adults as well. It doesn’t hurt to look. Thanks.
Just make sure you use your Domino’s coupons!
What is the wrong with you healthcare system? Why do you have to find your own specialist? Why is there no GP or insurance company that can appoint you a specialist? It’s great to be able to choose and alternative, but not like this…
I am so sorry you have to endure these amateur state affairs. I hope these post are letting a little steam off for you at least.
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!
I have seen those, thanks. But I hope they help others. Thank you!
I would recommend just picking up the phone and calling hospitals. I feel like they would be more helpful in pointing you to a specific physician than the Internet.
Possibly. It’s worth a try. Thanks.
Hey there. First of all, I’m glad it’s not a physiological cause. That’s a good sign.
I had a similar issue in the past, where I had difficulty swallowing anything, especially solid food. It was psychological. I also often choked on food. It wasn’t funny.
Turns out I had a whole lot of emotional issues/abuse issues from the past. I meditated a lot to find mental stability in my life. It helped me clear out a lot of issues, and also I guess it helped on the eating disorder thingy.
My eating has always been disordered. Then I noticed moralizing Christian guilt enjoyed watching me starve so I ran away to visit other families. First I found Siddhartha trading his privileged life for rice and beans in the woods. I learned to make and seek out chickpea curries and strengthened myself back up. Then I found falafel and putzed around the Levant and Mediterranean indulging the spread, soft, easy, homogenous protein. Avocado toast! Beans on toast! A can of cannellini on a crusty baguette. I inevitably get all hung up on the values and go running again, this time all the way back to the indigenous past to fight squirrels for acorns in the parking lot. I soaked a pocketful of those and made a stew with a potato and tomato. I thought this is awful! And my great great great ancestors said yeah ya silly goose, that’s why we built you the privilege.
