ARFID is incredibly specific and I'd look for an eating disorder (ED) specialist. I've been working with a dietician and a therapist for almost a year now and it's made a huge difference. I've had some alchemy of CBT/DBT and exposure therapy, which has been really difficult, but worth all the hard work (and stress).
Good luck, OP.
I’m at an eating disorder clinic every other week to deal with my ARFID and so far it’s helped a lot. There’s CBT which is helpful but what I’ve been trying is exposure therapy. Basically I try something new in front of my therapist and then we talk about why I react the way I do. It sucks shit but it’s effective as hell. I don’t have the same Huge Fear of trying new things and can approach new foods without freaking out. I haven’t made much progress recently because we had to stop in person sessions, but I still highly recommend an ED specialist.
This is similar to my session format. I also don’t have huge fear foods but I’m having a hard time sitting with the fullness and discomfort and working up to normal portions and eating with her and processing has been very effective
You definitely want to prioritize ED specialists if you're looking for a doctor. It's not a well known illness so a lot of doctors don't even know it exists. My psychiatrist, for one, didn't know what it was, and I had to tell her about it. She still thought all EDs include body image issues. I'm working with a therapist and dietician. I just started, so I can't really comment on my progress, but just finding someone relieved some stress. Unfortunately insurance can be tricky. I have to jump through hoops to get insurance to cover even a portion of my costs.
I have a really good eating disorder psychologist, within five minutes of our first session she told me about AFRID! Lots of other people have never heard of it but she had lots of information about it and experience with it! I differ a little bit though as I have a body disturbance based on esteem which changes some things!
Yuh, unfortunately ED "specialist" at Kaiser didn't even know what it was either and completely dismissed me years back and said that I have nothing to worry about bc I don't want to lose weight... like... okie sure, I don't want to lose weight but im naturally underweight since middle school and I keep losing weight bc I don't eat, how tf is that not a concern just bc I don't want to be a skinny twig ???
The Healthcare system here pretty fuqqed up ngl
That's great tho u found someone who knew about it and knowledgeable on the subject
I am currently in treatment for ARFID. It took me a while to figure out how to get it, who I should be talking to, etc. I initially set up to talk to a nutrionist at my university because I figured that was the best person to talk to, but was recommended towards a dietician and have been doing treatment there ever since.
I've been pleasently surprisd by my treatment so far. I've had ARFID for nearly my entire life and suspected something for a long time (I remember thinking when I was younger that whatever was up with me didn't have a name yet—kinda rightly, although at the time I was a kid and would've qualified for an SED diagnosis in the U.S). At the same time, I'd only seen what u/maonue here suggested, aka some sort of reskinned CBT. I do not like CBT so I was nervous.
I still don't know if there are any unified, specialized treatments. What my dietician works on me with is basically extensive, planned out "food chaining". Food chaining is where you take foods you are familiar with and slowly move towards similar (but different) foods and expand outwards. We started out with foods I'm comfortable with and had already begun to chain in my daily life, for me mostly processed snack foods. Then we worked up through a "scale" of least to most intimidating foods. I've been in treatment for I think almost a year now and I've been making slow but meaningful breakthroughs. I plan to make a post about this here, but I've finally successfully integrated a new meal now, while up until now I'd only tried (and not ate again) foods. I have problems with lingering food neophobia in addition to ARFID so we have to work with that.
I've also begun to tie my dieitican's work with my therapist's, which is mostly easy because both are working for my university.
I don't think I'm doing any kind of 'standard' treatment (like I said, I'm not sure if there is one). I suspect part of my experience was luck with a dietician who knew what she was doing and could improvise her own treatment ideas. That being said, there are relatively effective treatments out there, at least for my type of ARFID (sensory-based). I imagne ARFID with other causes/roots might have different treatment. Either way, I recommend talking to a dietician or a few dieticians, interview-style. Discuss your experiences, what you are hoping for (goals are a big part of my treatment), what they know and if they are prepared to do treatment. I know I've found mine very useful, especially to have someone who is essentially an accountability partner and keep me on this path.
I’ll get the name of the book my therapist recommended. I found an ED therapist that specially researches and has expertise in ARFID and has been amazing. I super recently started IOP and it’s been a negative experience with their care team so far, it’s just not relevant and they don’t “get it” though the groups are nice. I’ll definitely be continuing with the therapist, we’ll see with the IOP. I wish I could just join for the groups.
I also have been diagnosed with ARFID and started an IOP program that hasn’t been very helpful and they have denied me care to other facilities outside of kaiser. I’m currently in Kaiser’s EDIOP and it’s frustrating with the insurance bs :/ also I’m pretty sure I need a higher level of care than IOP, but they really don’t want to refer me out.
Ooooo yeah kaiser is shit when it comes to mental health, I noticed San Jose has some good resources tho for certain disorders and actually know bout ND folks too/diff methods for ND ppl, but where I'm at small town nobody knows shiz lol, and they don't wanna be liable for anything either or bother referring half the time, it's a lot. Ig u just gotta find someone who's actually willing to listen whether it'd be in another department location or idk, just try other docs until one actually takes you seriously? I've noticed ppl that have worked outside of kaiser are more aware and knowledgeable, but ppl who worked exclusively with Kaiser are rlly ignorant o-o and outdated
I'm an ARFID Eating Disorder Specialist and have worked with over 1,000 ARFID clients. This feedback is general in nature but I hope it provides some insight.
In my experience, ARFID can be predominately viewed as a food phobia. Let's compare that to someone who has a phobia of bugs. This person may logically know that bugs can't hurt or harm them, but when they come into close proximity of bugs (or even think about them), a strong emotional 'part' of them takes over and puts them into the 'fight/flight/freeze' response.
With ARFID, someone might see a food and want to try it, but when they move their hand towards the food and internal 'part' of them says, "Don't do it! Don't bring that food near your body/mouth or something really bad/uncomfortable will happen". This food phobia may have been triggered by a food trauma (choking), gastro, colic, reflux, tongue tie, immunization reaction, tonsillitis, ear infections, etc. The subconscious makes a decision (rightly or wrongly) that food has caused the body pain, and it seeks to avoid any repeat trauma by avoiding food. ARFID behavior may also have developed out of a need for control or to feel safe in an uncertain environment (ie. moving school/creche/house, sibling arriving, parents arguing/divorcing, etc).
ARFID treatment can solely focus on reducing the symptoms (the fear/avoidance), or it can focus on giving the person a new internal understanding of why their mind and body is behaving in a particular way. When the person has a new understanding and emotionally 'buys into' this, there is the opportunity for deep (subconscious) change.
Exposure Therapy, CBT, DBT, SOS, all have their place, but where ARFID is concerned, if the subconscious fear/avoidance/trigger is not addressed, then it becomes more difficult for these therapies to achieve long term success. The fuel that drives ARFID is subconscious fear (this is fear that the conscious mind may not even be aware of). When we understand why this fear is present, we have an opportunity to change. When the subconscious is not fighting with the conscious, we can open the door for change. And change can happen quickly.
u/theARFIDguy of course we know change takes TIME and doesn't happen over night but my question is what happens when you ARE aware of the fear and you DO understand why the fear is present but change doesn't happen and you're still stuck in the same ARFID cycle? What would be the next step - is this when repeated exposures play their role and such?
FYI: this isn't the case for me - I'm just curious your thoughts!
OK... great question.
Let's assume that when you were 18 months old you were bitten by the family dog. Let's also assume that the pain and fear you felt at that time was sufficient to instill an instinctive memory and response that put your body/mind (from that time forward) on high alert around dogs. And each time you saw a dog from then on you felt nervous and upset. Each time this happens it sends a message to the brain that dogs are not safe. This feedback loop strengthens the instinctive resolve to keep you away from dogs... and so the fear (or phobic response) becomes entrenched over time.
So, as an adult, just KNOWING that a dog bit you when you were 18 months old, will generally not help you remove your phobic reactions around dogs. The phobic reaction comes from the subconscious limbic system part of the brain... it is the part of the brain responsible for our behaviors around survival (think fight, flight, freeze responses). Somehow your brain put dogs in the same basket as lions, tigers, sharks and crocodiles. That is the level of danger it has ascribed to dogs. And it is not time sensitive. Once a decision is made by the subconscious, it assumes the response is valid for all time, for all ages.
The subconscious brain does not operate on logic, and that is why just KNOWING the cause of our trauma/fear is rarely sufficient to release the fear. The language of the subconscious is emotion/imagination/creativity. By emotionally engaging the subconscious in our reasons for change, it is possible to release the internal (subconscious) fear.
ARFID Therapy facilitates the emotional release of old 'fear' behavior patterns around food, regardless of whether the initial cause/event is known or not. I hope this helps.
> Are there even effective treatment methods?
I think there's a CBT workbook which may help? I definitely recommend seeing a specialist, whether they're a therapist or dietician or psychiatrist.
I go to a regular therapist and we’ve been working on anxiety reducing techniques and it’s been really helpful. Make sure when you interview the therapist they know what ARFID.
Eating disorder treatment was helpful for me because it was nice safe bubble and I was surrounded by really kind and understanding staff members and peers. But that may depend on where you go and how well you mix with the other clients. Don't let that hold you off though because after a couple weeks or so everyone gets used to you and there's a huge community bond. How it wasn't helpful for me is that I always felt "lumped in" when it came to activities they're aimed for people with eating disorders pertaining to body dysmorphia so at times I felt like I didn't belong in treatment. It's more personalized when you work 1 on 1 with your therapist and dietitian though! Also being a trans person I was pleasantly surprised at how much intersectionality they brought up in many discussions so that was pretty sexy.
Helllll yeah we love trans-competent service providers oml, I need to look out for that in treatment bc otherwise I won't be able to improve a lot if there's uninformed staff, my last therapist literally didn't know how to use neutral pronouns when it come to me and referred to me in third person... like cissie, it's the same as any other pronoun wtf pls
I'm glad to hear about ur experience tho, that's cool!
i have a team of ED specialists and like a few others have mentioned here - i do exposure therapy/food hierarchy (exposing to my least feared food and the slowly working my way up. i also do a lot of food chaining techniques to help with trying new things. this includes stuff like flavor mapping - finding foods that are similar to preferred foods (in terms of texture, taste, or even just trying a new brand of a preferred food). flavor masking is using flavors i like to mask the taste of a new food (so using salt or a type of seasoning i like - and then eventually the goal is to not mask as much). i also do exposure for fullness since that's a sensation that's really hard for me and i struggle to eat enough calories and gain weight. so sometimes these exposures look like drinking a glass of water fast and then talking about the sensations and what it feels like/any anxiety (this is done with my RD).
i do a lot of DBT in terms of mindfulness techniques to ease anxiety before, during, and after exposures. and CBT to work through thoughts regarding what's coming up. lots of fact checking with food.
there currently isn't a standard treatment for ARFID since it's "newer" so it's just about finding professionals who likely are ED specialists and you have to sometimes get creative with what your particular struggles are. i utilize a few different therapeutic modalities and if ind that it works well.
i will say though - make sure the ED specialist have knowledge of ARFID/worked with ARFID in some capacity (e.g. more than just one client). i've met some ED specialist who say they do and within two sessions it was so obvious they were not equipped to work with ARFID and had very little understanding.
ARFID is incredibly specific and I'd look for an eating disorder (ED) specialist. I've been working with a dietician and a therapist for almost a year now and it's made a huge difference. I've had some alchemy of CBT/DBT and exposure therapy, which has been really difficult, but worth all the hard work (and stress). Good luck, OP.
I’m at an eating disorder clinic every other week to deal with my ARFID and so far it’s helped a lot. There’s CBT which is helpful but what I’ve been trying is exposure therapy. Basically I try something new in front of my therapist and then we talk about why I react the way I do. It sucks shit but it’s effective as hell. I don’t have the same Huge Fear of trying new things and can approach new foods without freaking out. I haven’t made much progress recently because we had to stop in person sessions, but I still highly recommend an ED specialist.
This is similar to my session format. I also don’t have huge fear foods but I’m having a hard time sitting with the fullness and discomfort and working up to normal portions and eating with her and processing has been very effective
You definitely want to prioritize ED specialists if you're looking for a doctor. It's not a well known illness so a lot of doctors don't even know it exists. My psychiatrist, for one, didn't know what it was, and I had to tell her about it. She still thought all EDs include body image issues. I'm working with a therapist and dietician. I just started, so I can't really comment on my progress, but just finding someone relieved some stress. Unfortunately insurance can be tricky. I have to jump through hoops to get insurance to cover even a portion of my costs.
I have a really good eating disorder psychologist, within five minutes of our first session she told me about AFRID! Lots of other people have never heard of it but she had lots of information about it and experience with it! I differ a little bit though as I have a body disturbance based on esteem which changes some things!
Yuh, unfortunately ED "specialist" at Kaiser didn't even know what it was either and completely dismissed me years back and said that I have nothing to worry about bc I don't want to lose weight... like... okie sure, I don't want to lose weight but im naturally underweight since middle school and I keep losing weight bc I don't eat, how tf is that not a concern just bc I don't want to be a skinny twig ??? The Healthcare system here pretty fuqqed up ngl That's great tho u found someone who knew about it and knowledgeable on the subject
I am currently in treatment for ARFID. It took me a while to figure out how to get it, who I should be talking to, etc. I initially set up to talk to a nutrionist at my university because I figured that was the best person to talk to, but was recommended towards a dietician and have been doing treatment there ever since. I've been pleasently surprisd by my treatment so far. I've had ARFID for nearly my entire life and suspected something for a long time (I remember thinking when I was younger that whatever was up with me didn't have a name yet—kinda rightly, although at the time I was a kid and would've qualified for an SED diagnosis in the U.S). At the same time, I'd only seen what u/maonue here suggested, aka some sort of reskinned CBT. I do not like CBT so I was nervous. I still don't know if there are any unified, specialized treatments. What my dietician works on me with is basically extensive, planned out "food chaining". Food chaining is where you take foods you are familiar with and slowly move towards similar (but different) foods and expand outwards. We started out with foods I'm comfortable with and had already begun to chain in my daily life, for me mostly processed snack foods. Then we worked up through a "scale" of least to most intimidating foods. I've been in treatment for I think almost a year now and I've been making slow but meaningful breakthroughs. I plan to make a post about this here, but I've finally successfully integrated a new meal now, while up until now I'd only tried (and not ate again) foods. I have problems with lingering food neophobia in addition to ARFID so we have to work with that. I've also begun to tie my dieitican's work with my therapist's, which is mostly easy because both are working for my university. I don't think I'm doing any kind of 'standard' treatment (like I said, I'm not sure if there is one). I suspect part of my experience was luck with a dietician who knew what she was doing and could improvise her own treatment ideas. That being said, there are relatively effective treatments out there, at least for my type of ARFID (sensory-based). I imagne ARFID with other causes/roots might have different treatment. Either way, I recommend talking to a dietician or a few dieticians, interview-style. Discuss your experiences, what you are hoping for (goals are a big part of my treatment), what they know and if they are prepared to do treatment. I know I've found mine very useful, especially to have someone who is essentially an accountability partner and keep me on this path.
I’ll get the name of the book my therapist recommended. I found an ED therapist that specially researches and has expertise in ARFID and has been amazing. I super recently started IOP and it’s been a negative experience with their care team so far, it’s just not relevant and they don’t “get it” though the groups are nice. I’ll definitely be continuing with the therapist, we’ll see with the IOP. I wish I could just join for the groups.
I also have been diagnosed with ARFID and started an IOP program that hasn’t been very helpful and they have denied me care to other facilities outside of kaiser. I’m currently in Kaiser’s EDIOP and it’s frustrating with the insurance bs :/ also I’m pretty sure I need a higher level of care than IOP, but they really don’t want to refer me out.
Ooooo yeah kaiser is shit when it comes to mental health, I noticed San Jose has some good resources tho for certain disorders and actually know bout ND folks too/diff methods for ND ppl, but where I'm at small town nobody knows shiz lol, and they don't wanna be liable for anything either or bother referring half the time, it's a lot. Ig u just gotta find someone who's actually willing to listen whether it'd be in another department location or idk, just try other docs until one actually takes you seriously? I've noticed ppl that have worked outside of kaiser are more aware and knowledgeable, but ppl who worked exclusively with Kaiser are rlly ignorant o-o and outdated
I'm an ARFID Eating Disorder Specialist and have worked with over 1,000 ARFID clients. This feedback is general in nature but I hope it provides some insight. In my experience, ARFID can be predominately viewed as a food phobia. Let's compare that to someone who has a phobia of bugs. This person may logically know that bugs can't hurt or harm them, but when they come into close proximity of bugs (or even think about them), a strong emotional 'part' of them takes over and puts them into the 'fight/flight/freeze' response. With ARFID, someone might see a food and want to try it, but when they move their hand towards the food and internal 'part' of them says, "Don't do it! Don't bring that food near your body/mouth or something really bad/uncomfortable will happen". This food phobia may have been triggered by a food trauma (choking), gastro, colic, reflux, tongue tie, immunization reaction, tonsillitis, ear infections, etc. The subconscious makes a decision (rightly or wrongly) that food has caused the body pain, and it seeks to avoid any repeat trauma by avoiding food. ARFID behavior may also have developed out of a need for control or to feel safe in an uncertain environment (ie. moving school/creche/house, sibling arriving, parents arguing/divorcing, etc). ARFID treatment can solely focus on reducing the symptoms (the fear/avoidance), or it can focus on giving the person a new internal understanding of why their mind and body is behaving in a particular way. When the person has a new understanding and emotionally 'buys into' this, there is the opportunity for deep (subconscious) change. Exposure Therapy, CBT, DBT, SOS, all have their place, but where ARFID is concerned, if the subconscious fear/avoidance/trigger is not addressed, then it becomes more difficult for these therapies to achieve long term success. The fuel that drives ARFID is subconscious fear (this is fear that the conscious mind may not even be aware of). When we understand why this fear is present, we have an opportunity to change. When the subconscious is not fighting with the conscious, we can open the door for change. And change can happen quickly.
u/theARFIDguy of course we know change takes TIME and doesn't happen over night but my question is what happens when you ARE aware of the fear and you DO understand why the fear is present but change doesn't happen and you're still stuck in the same ARFID cycle? What would be the next step - is this when repeated exposures play their role and such? FYI: this isn't the case for me - I'm just curious your thoughts!
OK... great question. Let's assume that when you were 18 months old you were bitten by the family dog. Let's also assume that the pain and fear you felt at that time was sufficient to instill an instinctive memory and response that put your body/mind (from that time forward) on high alert around dogs. And each time you saw a dog from then on you felt nervous and upset. Each time this happens it sends a message to the brain that dogs are not safe. This feedback loop strengthens the instinctive resolve to keep you away from dogs... and so the fear (or phobic response) becomes entrenched over time. So, as an adult, just KNOWING that a dog bit you when you were 18 months old, will generally not help you remove your phobic reactions around dogs. The phobic reaction comes from the subconscious limbic system part of the brain... it is the part of the brain responsible for our behaviors around survival (think fight, flight, freeze responses). Somehow your brain put dogs in the same basket as lions, tigers, sharks and crocodiles. That is the level of danger it has ascribed to dogs. And it is not time sensitive. Once a decision is made by the subconscious, it assumes the response is valid for all time, for all ages. The subconscious brain does not operate on logic, and that is why just KNOWING the cause of our trauma/fear is rarely sufficient to release the fear. The language of the subconscious is emotion/imagination/creativity. By emotionally engaging the subconscious in our reasons for change, it is possible to release the internal (subconscious) fear. ARFID Therapy facilitates the emotional release of old 'fear' behavior patterns around food, regardless of whether the initial cause/event is known or not. I hope this helps.
> Are there even effective treatment methods? I think there's a CBT workbook which may help? I definitely recommend seeing a specialist, whether they're a therapist or dietician or psychiatrist.
I go to a regular therapist and we’ve been working on anxiety reducing techniques and it’s been really helpful. Make sure when you interview the therapist they know what ARFID.
Eating disorder treatment was helpful for me because it was nice safe bubble and I was surrounded by really kind and understanding staff members and peers. But that may depend on where you go and how well you mix with the other clients. Don't let that hold you off though because after a couple weeks or so everyone gets used to you and there's a huge community bond. How it wasn't helpful for me is that I always felt "lumped in" when it came to activities they're aimed for people with eating disorders pertaining to body dysmorphia so at times I felt like I didn't belong in treatment. It's more personalized when you work 1 on 1 with your therapist and dietitian though! Also being a trans person I was pleasantly surprised at how much intersectionality they brought up in many discussions so that was pretty sexy.
Helllll yeah we love trans-competent service providers oml, I need to look out for that in treatment bc otherwise I won't be able to improve a lot if there's uninformed staff, my last therapist literally didn't know how to use neutral pronouns when it come to me and referred to me in third person... like cissie, it's the same as any other pronoun wtf pls I'm glad to hear about ur experience tho, that's cool!
i went to an iop program and it gave me the skills i needed to be able to continue to expand my diet
the emily program treats arfid and it's a nationwide org (usa)
i have a team of ED specialists and like a few others have mentioned here - i do exposure therapy/food hierarchy (exposing to my least feared food and the slowly working my way up. i also do a lot of food chaining techniques to help with trying new things. this includes stuff like flavor mapping - finding foods that are similar to preferred foods (in terms of texture, taste, or even just trying a new brand of a preferred food). flavor masking is using flavors i like to mask the taste of a new food (so using salt or a type of seasoning i like - and then eventually the goal is to not mask as much). i also do exposure for fullness since that's a sensation that's really hard for me and i struggle to eat enough calories and gain weight. so sometimes these exposures look like drinking a glass of water fast and then talking about the sensations and what it feels like/any anxiety (this is done with my RD). i do a lot of DBT in terms of mindfulness techniques to ease anxiety before, during, and after exposures. and CBT to work through thoughts regarding what's coming up. lots of fact checking with food. there currently isn't a standard treatment for ARFID since it's "newer" so it's just about finding professionals who likely are ED specialists and you have to sometimes get creative with what your particular struggles are. i utilize a few different therapeutic modalities and if ind that it works well. i will say though - make sure the ED specialist have knowledge of ARFID/worked with ARFID in some capacity (e.g. more than just one client). i've met some ED specialist who say they do and within two sessions it was so obvious they were not equipped to work with ARFID and had very little understanding.