Avoidant Restrictive Food Intake Disorder (ARFID)

Okay, I’m here to talk about ARFID again.  I posted recently about it, but the post included too much personal detail, including details around why I thought I may have developed the condition, childhood stuff, etc.  Someone found out I deleted that post and then gently goaded me to re-do an ARFID post and make it evergreen.  So, that’s what I will do.  It’s a bit of a challenge for me.  This evergreen ARFID post.

This is because I dislike showing vulnerability for more than 2 or 3 days on my blog.  Even just saying “I have ARFID” is vulnerability for me.  It’s a slightly embarrassing condition.  I’m sure everyone who has an eating disorder feels that way though.

I’m also on the dating websites right now.  If I connect with a new friend, I will sometimes provide a link to one of my funny posts or the one where I show off playing guitar.  My fear is that if they decide to research around, they’ll see something like this post.  However, I should probably make new friends who are aware of my ARFID so that if anyone has a problem with it, they can bug off.   

So I am going to talk about this and make it evergreen.  I may modify it by deleting that whole introduction up there, but beyond that, this will stay.   

*

Avoidant Restrictive Food Intake Disorder (ARFID) is differentiated from other eating disorders because there are no body image issues.  The condition is driven primarily by anxiety, sometimes severe, which for whatever reason begins manifesting as a fear of food.  This food fear can manifest in many different ways.

In my case, the condition started out as fear and then “graduated” into a general dislike of many food textures.

I’ve read about people having choking incidents and developing ARFID.  Sometimes kids develop ARFID out of nowhere without a choking incident and the condition stays with them until adulthood.  Other times kids develop it, and the condition passes as they grow (this happened with one of my nieces).

One myth about ARFID is that it’s strictly a kid’s issue.  Oh, I don’t think so.  I developed this problem two years ago.  I was in my 30’s.  And it developed seemingly out of nowhere.  No choking incident, no general life triggers that I can think of… besides a fairly stressful job.

For me, it began strictly as a fear of swallowing (phagophobia).  I was already aware that I had some level of generalized anxiety.  Every now and then I’d have a panic attack, but not very often. 

One day I had a severe panic attack. Looking back, that panic attack unleashed ARFID.  One would think that since I had a panic attack, I would realize this phagophobia was in my head.  The problem is that when you experience this, it seems very real to you.  It’s like a bad psychedelic trip.

At some point, the phagophobia developed into what I now recognize as ARFID.  Even after I made some progress in overcoming the swallowing fear, I was now faced with a strong dislike of many food textures.  One thing many ARFID sufferers have in common is a major problem with food textures.

My sense of taste was also affected.  I can remember cooking up some eggs (which I have always loved) taking a bite, and it tasted absolutely disgusting to me.

Anxiety on this level can change how your brain interprets taste and texture. I do not have proof. I have no scientific articles to offer – but I have experienced this phenomena.

I had no idea what was happening to me.  I did some research and found information about ARFID.  My symptoms matched up to a T.

It was a relief to realize that I wasn’t going insane, but I also remember crying (and I rarely cry) because I now realized that I had developed a serious condition.  An eating disorder. I knew that I had little chance of solving this problem on my own.   

Especially at that point – time has since passed. I am now accustomed to having ARFID.  Since I am accustomed to it, and since I did Intensive Outpatient treatment, I deal with the problem a lot more effectively.

But two years ago?  I had no frame of reference.  I simply stopped eating for a couple of months and lost a massive amount of weight.

I explained this problem to my psychiatrist, and she referred me to The Emily Program to attend the Intensive Outpatient Program (IOP).

I was pretty scared.  But I couldn’t get around the issue on my own, and I needed help.  So, I did it.

The IOP treatment helped me.  Not all at once – like any therapy, it seemed to take root most effectively after the program was done.  

They do “Therapeutic meals”.  This is the main event of eating disorder treatment. You sit at a table with other eating disorder patients.  You eat a meal.  A dietician and therapist sit at the table and eat with you. 

If you’re struggling, either the dietician or the therapist will help you out.  IOP typically includes individual therapy and group therapy sessions in addition to the therapeutic meal.  

The supportive environment, in and of itself, is extremely helpful. You’re around other people that struggle to eat. All eating disorders involve anxiety.  Some eating disorder sufferers also experience depression mixed with anxiety, borderline personality disorder, all manner of not-so-fun mental illness.

As an ARFID person, you may not be able to relate to the body image stuff, however, I learned that severe anxiety also drives conditions like Anorexia, binge eating, and Bulimia. 

None of these individuals enjoy eating.  None of these people want to eat in front of other people.  All eating disorders have those two things in common.  Though we are different, we have a lot in common.

So that was the value of IOP for me. 

*

My ARFID went into remission for a year and a half.   It re-emerged in November of 2020. 

I can point to work stress on that one.  I was a recruiter.  We were in COVID time.  The company was purging money, losing employees, shutting down facilities… and I was solely responsible (as the only recruiter in a company of 700+ employees) for filling some incredibly hard to fill roles. 

I contacted The Emily Program again.  I sought IOP.  The assessor agreed that I’m at IOP level, but unfortunately they are not doing in-person therapeutic meals at my local EP / IOP location.  She suggested I do residential inpatient.  She didn’t think regular outpatient would help me.  I submitted to the idea.   They put me on a waiting list.   Finally, my number came up.  Quite recently.

I tried residential for one day.  It did not work out. 

I have since read that many ARFID people don’t have a good experience with residential.  You’re typically the only ARFID person there, but you have to abide by rules designed for folks who purposely suppress their appetite.  As an example, they took my chewing gum away.  That pissed me off.  

I do not suppress my appetite on purpose.  Although I have since realized that it’s entirely possible that I “accidentally” use suppression techniques in order to deal with the fact that sometimes I can’t eat.

Excessive nicotine lozenges.  Chewing gum.  Tons of bubbly soda water.  Things like that.  Although, one could argue these are also the tools of an anxious person dealing with her general anxiety.  It’s all kind of a blur in that way.   

*

For me, ARFID goes in phases.  Although, my current “phase” is now lasting so long that I’m beginning to think it’s just chronic with good days or good weeks sprinkled in between.

You learn what works and what doesn’t work. 

Case in point – my latest discovery (inspired by that one day of residential treatment) is that freshly cooked quality food goes a long way toward making it easier for me to eat.   Or even just “freshly cooked” food from Taco Time.  Heh. 

In other words – real food, freshly cooked or heated, with macronutrients.

So… don’t try to live out of cans and boxes.  Seriously. 

Or if you’re unemployed like me, at least go buy fresh food every few days and do your best to deal with leftovers.  

Lately, I find that if I try to eat leftover food in the morning I struggle.  This happened just yesterday.

My condition is mostly behaving right now.  I still stick to “safe foods”.  The problem with me is that even sometimes my safe foods are not always safe.  Back in February I couldn’t get anything down.  There were many “smoothie and Boost” days.

But anyway, safe foods right now are egg and potato.  Fresh cooked. 

Two days ago I cooked them up fresh.  I read something for distraction while eating and – boom – food goes down and tastes wonderful.  Same thing today, cooked fresh – ate it mostly like a normal person.  

Yesterday?  Leftover potato and egg.  I thought I was going to puke after 4 bites.  I gave up and made a smoothie.

However – time of day matters for me.  I heated those same leftovers later in the evening and it went mostly fine.  Aside from taking much longer to eat.

One annoying thing is that when I’m struggling with this condition, it will sometimes take me 2 hours to get ¾ of a full meal down.  That isn’t a problem at this particular moment.  If it’s fresh cooked, I’ll get it down in 30-45 minutes. 

So you really have to figure out what works for you.  You must pay attention to what matters for you.  Time of day seriously matters for me.

Unless it’s a fresh cooked meal, I better not try to eat in the morning.  I do a smoothie with Greek yogurt, fruit, peanut butter, and vitamins.  Sometimes sunflower seeds are acceptable (they are a safe food for me).   It depends on the morning where sunflower seeds are concerned.

Exercise matters.  It relieves my general anxiety.  Slowing down on coffee matters.  Staying on my anti-depressant matters.  Monitoring my impulsive nature matters (I am verrry impulsive).

Even so, I have accepted that this will always be with me.  I will have good days, and some days I will struggle. 

I may have another 2-month spell where I am living on smoothies and ice cream.  Well, hey.  I know that it passes.  I know how to make a nutrient dense smoothie.  Boost is wonderful. 

One thing I learned is do not avoid food.  No matter how shitty you feel, try to eat solid food every single day.  If you only get two bites down?  That’s okay. 

Pat yourself on the back and try again the next day.  You must face and deal with the fear.  Continuously. 

Or, if you believe it’s less a matter of fear and more a matter of repugnance in your case (“all food is disgusting”) – you still need to try and eat.   

Find some food – any food – that you can get down.  And eat it.  Because your hunger signals can get fucked up very quickly. 

And when you no longer have hunger signals, you can go into malnutrition.  Find the textures and tastes that do work, and challenge new textures when you can. 

Experiment to see if a texture you couldn’t handle in the morning is acceptable at night.  Monitor your anxiety and try to relieve your general anxiety.

It is easy to run away from it and say, “well shit, I don’t need food anyway. I could stand to lose a few pounds.”   First of all, ARFID people are at risk of developing Anorexia anyway, from what I have read. 

I experienced flirtation with that dark shadow.  I had moments where I thought about purposely restricting to the extent possible…. just so that I felt in control instead of my food fear and texture dislike controlling me. 

It was fucked up and I challenged myself away from that thinking.  It’s not hard for me to see how that could happen though.

So I kept eating little tiny bites in February.  Eventually, the anxiety started rolling away.  There were days where all the sudden I could handle textures without wanting to gag.

Residential would have likely helped push me into remission sooner, had I been able to handle being the only ARFID person.  I just couldn’t do it.  When you take a piss they go look in the toilet to make sure you didn’t puke.  That’s serious overkill for an ARFID person.   Between that and locking up my gum and nicotine tablets?  I said, “Fuck ya’ll”.   Intensive Outpatient is the best. 

I also have not lost significant weight at all, owing to the fact that I now know how to deal with this problem better due to IOP.  I am roughly 138 lbs.  In 2019 I was down to 116.  

The other route is to find a good therapist who has experience with eating disorders… or simply anxiety.  Make sure that therapist understands and can treat severe anxiety issues.

That’s my next project.  As a matter of fact, I will be looking up therapists tomorrow morning.  My deal in ditching residential was like, “Bitch… you’re going to get a therapist and push for twice a week session”.

So that’s what I’ll be doing.

A good source of support for ARFID (and a good learning tool) is the ARFID subreddit:

https://www.reddit.com/r/ARFID/

Here’s a screen snip from the ARFID reddit that summarizes ARFID well:

For some people it’s “uninteresting” for others it’s “disgusting” for some it’s “I’m going to choke! / I can’t swallow”. It manifests itself in rather diverse ways. If you’re really lucky, like me, you get to deal with “can’t swallow” phases mixed in with “everything tastes like a pine cone” phases.

I can ramble, huh?  This is pretty sloppy and unscientific, but I just wanted to get it down. Kind of like eating, sometimes. “Just get it down!”

Thanks for reading.

-ZS

15 thoughts on “Avoidant Restrictive Food Intake Disorder (ARFID)

    1. Thank you. I’ll visit that link about safety behaviors and check it out. Rather timely… since I am eating right now and require reading material. 🙂 Thanks for adding to your resources page. Cross my heart that this post stays up forever. Although I may modify the content at some point to make it better. It was written a bit sloppily in haste before bedtime.

      Liked by 1 person

    1. Thank you :). This type of eating problem will force anyone to be strong and keep trying. Unless they want to starve to death. It’s messed up; the more I avoid food the less I want to eat.

      Liked by 1 person

  1. Thank you! This was really insightful. I’m definitely going to check out the Emily program to get an idea of what resources are out there. My therapist and I are working on finding a local specialist as well.

    Liked by 1 person

    1. Thanks for reading 🙂. I am glad that you are working with a therapist on this – it’s a bitch of a problem and it’s good that you have a support person on this. I loved Emily Program’s Intensive Outpatient Program (IOP). It served my needs really well for a long time until I “relapsed” as they say. As you may have seen from the post – residential inpatient not so much. Residential really is strictly designed for bulimia / anorexia where I felt much more welcome at IOP and I fit in a lot better. IOP is three hours for four days a week. You get to leave and come back, it’s great. You still get the therapeutic meals (that is most helpful part) but you’re not trapped and in IOP they don’t go look in the toilet after each bathroom visit to make sure you didn’t puke. I had a real problem with that lack of trust. And of course, there are also therapists who specialize in talk therapy for eating disorders including ARFID. Really glad you visited and I wish you well in finding the right resources and pulling through this.

      Like

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