There is still power here, in this body of mine.

my question: do you have any advice or resources for someone who wants to gain weight but struggles with ARFID?

personally, the disorder manifests as a general reluctance to consume food, rather than sensory-based avoidance.

eating just feels like a chore, but i also want to get big & strong. it's a struggle lol.

Ooof I feel this. I do not have arfid, but due to Crohn's disease I often feel a general aversion to eating. I have frequently described it as a chore.

One thing that has helped a lot has just been building muscle. This has helped regulate my appetite sense and often helps make food feel more appealing to me. I started training first and my appetite started improving after a few weeks

Other options in no particular order:

Drinking your calories may be a good option for you. Either making protein shakes yourself or buying premade ones. Something you can drink through a straw while doing something else so you don't have to think about the fact that you're eating may help.

Adding a drizzle of olive oil over any savory foods you are able to eat is a very subtle way to boost the calories and add extra nutrients

It may help to limit your caffeine consumption right before your meal times, because caffeine can act as an appetite suppressant and that could compound the problem.

It might also help to just make a game out of eating. Get whatever you're least averse to eating at that moment and put on a show or movie and make it a "drinking" game, except instead of taking shots you would just take bites of your meal or snack. Like "every time the main character says their love interest's name I will take two bites" Or whatever.

Eating a spoonful of peanut butter or other nut or seed butter a few times a day is also a fairly non committal way to get a good burst of calories and nutrients.

Eating according to a schedule instead of relying on feeling the desire to eat may also help. Set a timer and eat a meal every 3-4 hours during your waking hours, aiming to eat breakfast within the first hour you get up

Or grazing may be more comfortable for you instead. Eat just a little snack, not a whole meal, every 1-2 hours, ideally aiming to alternate between protein, produce, fats, carbs, and fiber, but getting enough calories is the main focus.

And most of all, just give yourself time.

People speak of online "spaces" but online does not have physical space in it and that is the problem.

It's like if all the conversations people ever had in public had to take place in a huge warehouse-sized room where everyone could hear and see everyone else at the exact same volume and with the exact same clarity no matter where they were standing.

Some people are seriously discussing political action. Some people are goofing off. Someone is panhandling, someone is venting to their friends about something awful that happened to them, someone is giving a speech about a topic that interests them, someone is crying about the pain in their life, someone is just thinking out loud to themselves, a bunch of people just want to watch movies or hang out with their friends. Someone is trying to sell some junk. A bunch of people are passing around newspapers.

And all of these people can hear and see each other perfectly so that they don't even know if they themselves or anyone else is in an intimate conversation with people who sympathize, if they're having a town hall meeting, if they're attending a lecture, if they are behind the podium giving a lecture, if they're hanging out at the bar with friends, if they're in their friend's car, or if they're just in a public park watching the clouds.

If someone who thinks they're in the movie group makes a comment about the movie, the people who think they're in the audience at the lecture hall will think the movie watcher is the lecturer behind the podium. So, they will turn to their friends and say "wow, get a load of that guy, they just said..." but the people who think they are at a town hall meeting will think "wow, this is clearly an important concern," but the person who thinks they are crying to their friends is like "Seriously? We're talking about a MOVIE when my life is falling apart?"

I made a mistake on Bluesky and now my notifications won’t stop but hey i’ll post it here too!

in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.

people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.

My ward is the respiratory ward - CF is one of the things we specialize in.

Since this med came out we haven't had a SINGLE CF admission to the ward

There used to always be a CF patient spending a couple of months with us at a time

There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)

There's a set of the local frequent flyers that we all know so well

Except

No we don't

On the CF specialist ward (with reasonable staff turnover)

Half the staff have probably never even seen a CF patient

Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.

That is per month with the most common coupon people are likely to use.

But don't worry, there's grants and patient assistance programs you can apply for. 🤞🫠 Most people in high income countries like the USA can get it "covered" through insurance for fewer thousands of dollars. Or even less if your insurance is good or the manufacturer likes how poor and/or on Medicaid you are! A good social worker will help you with the process, and make sure your yearly reapplications and PAs are done a little early so they have time to think about it before you run out. Jesus Christ.

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