This is a community forum for general questions and discussion about resources!
Commonly Requested Lists:
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Treatment centers that allow veganism
(Especially helpful for high school seniors)
Ideas of conversation topics, questions, and resources to post include things like online support groups, virtual treatment, app-based recovery support, family based therapy (FBT), free/low cost groups, scholarships, financial aid, navigating insurance, recovering when you aren’t able to go to a higher level of care, free/low cost sliding scale treatment, finding a lawyer, FMLA, disability, Medicare, etc.
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Isn’t this site a review site? There are so many requests and private emails being exchanged for general information or information that could be obtained by admissions.
Maybe people could use forums or facebook to connect.
feels really excluding coming here and people just privately want to talk to others. I probably am not deserving of anything. But this is my view and it feels like a clique . Maybe I’m not sick enough to know this information.
*admin note: this thread has been moved from the sanford ND review page to the resources page, as it is now a more general discussion rather than specific to sanford
Pinning this. <3
Thanks ❤️
I’d like to respond to this, if that’s okay — I’ve been to Acute multiple times and have had the range/gamut of experiences (horribly traumatic and cookie-cutter and extremely customized) and it’s the only place that previously has given me a chance at a real life.
People providing emails on this site has been helpful in getting to know individuals who can understand what I’ve gone through (and vice versa) and through that, I’ve been able to provide mentorship and support to people who end up admitting, either while they’re preparing for Acute or once they’re there. I wouldn’t discount sharing personal information and a lot of times, I’m not telling them what the team can do for THEM, but sharing my experience which sometimes gives people some helpful ideas on how to communicate their needs as well as less deep things like which food items offered taste the best. I’m happy to say I know I’ve helped people, and I’ve felt very comforted by the people who’ve been willing to share details with me privately, sharing information I wouldn’t have felt otherwise.
Admissions is just admissions — they’re not the providers or even the nurses/anyone clinical. For a lot of places, they often don’t answer questions about the medical piece and also don’t connect you with a clinician to discuss. I think for how traumatic treatment can be and often not productive or even inappropriate for cases, there is nothing wrong, for those who are willing to share details (even of their own lived experience, not to be taken as Bible or the standard by any means) to do so via email as otherwise, this page would be a lot of people clogging it up with their personal symptoms or comorbidities that may not be applicable to everyone.
Additionally, I’m not comfortable (a lot of times) sharing extremely-personal details with the whole EDTR community, so emails provide me with a safe space to do so.
This is just my 2 cents. That being said, I read a LOT of the traditional reviews and public information before considering whether to provide my email for 1-on-1 communication, and the review format Rachel has created is very helpful for getting a jist of the nuts & bolts of a program.
I very much agree with this.
I appreciate your well thought out response. I would like to get your insights if you wouldn’t mind emailing me. I am a woman of a certain age and have been through many treatment models. Thank you very much, I do appreciate it.
Kind regards,
Barbara
NL- I apologize for being one of those who has requested to correspond by email. I just don’t always feel comfortable giving more personal/identifying info on a public forum. I hope you know that it has absolutely nothing to do with how sick a person is or how deserving they are <3
Respectfully this is a huge leap to make from people wanting a more private mode of communication. I agree it should just be posted but this comes off as super manipulative/personalizing.
I agree with this wholeheartedly. People asking for direct or private communication are doing so with the knowledge that all we post here is public forever, and not with gatekeeping information from hypothetical other people in mind. and this sort of comes of as, i agree, pretty manipulative.
I’m sorry for taking so long to jump in. I didn’t realize these comments were attacking a person rather than the site policy, nor how much the comments had stacked up. I apologize to everyone in this thread for this confusion that ensued. To clarify, not exchanging contact info is a site policy and has been for well over a decade. The person talking about that here is simply trying to explain site policy and rules. Please everyone do not attack them. It is stated in the site rules as well as throughout the site. I mistakenly assumed that EDTR was being called manipulative and so didn’t intervene. It is obviously okay to disagree publicly and vociferously with EDTR policy and to voice the reasons why (although I prefer that it doesn’t push down posts from other community members that are actually about a treatment center on the treatment center’s review page). I am only now realizing a community member is being called manipulative for doing so and has been being called manipulative for the past year. This is not okay, and is also against the rules.
Technically I’m not supposed to allow any exchange of contact information on EDTR. I’ve been making exceptions the last couple years, but that is solely for the purpose of not inhibiting access to care. Not for when people don’t like the boundaries EDTR requires, but they could still have their questions answered on here. It takes a significant amount of my time to constantly facilitate exchange of personal information, and to go back through every post on the site to make sure it was subsequently redacted. Remember that when you post your contact info on here in the body of your comment, that text is just as visible as when you post your actual questions in the body of the comment. In addition, having someone’s personal information public on here puts me at risk legally. Hence why I have to go back and redact. This time spent takes away from other tasks I have on here. EDTR is a passion project and I admin it on an entirely volunteer basis. It’s the only way to keep ads off and prevent treatment centers from sneaking their presence and influence on. But it means that my time is more limited because I still have to make a living outside of here. Even more so because I pay for everything on here myself. I’ve been blessed to have a couple community members help share and explain site rules and some of the benefits of the rules, so that I don’t have to do it all by myself. If the community is going to attack other community members and call them manipulative, I can stop making exceptions.
Hi, I was just saying that especially in the current climate, being acutely aware of personal information being publicly available is honestly just the only way that many of us are able to feel less at risk while attempting to find care, and as such, the attempts at individual contact are based in personal safety and protection during a time in which it is becoming less and less safe to be a person with mental health issues, as (at least in the USA) the risk it poses to your legal rights and employment are becoming exponentially more dramatic.
I myself live in a state with very few protections for mentally ill individuals, and I have to be very, very careful to avoid potentially being committed, because once the state puts you in it is VERY hard to get out. There are also a lot of online tracking laws that do not work in our favor, so posting personal information online is not a neutral act, especially when it is connected to my e-mail
In this context, I think people were referring to someone saying “maybe I’m not sick enough for this information” as being emotionally manipulative, especially in this context. I don’t think the person themselves was being referred to that way, but rather, that that comment made a lot of us feel really guilty for trying to find information about care without possibly putting our identities and careers at risk.
i don’t think anyone meant to call out other individuals but I’m sorry if it came offf that way <3 We’re really grateful for having the relative impartiality of this site
Hi! I can see how the original comment might come across as manipulative to some people, I’m not the person who commented it, but I just wanted to add- I think it’s important to remember when using this site that not everyone on here is in the same place mentally, or in the same place recovery wise.
There are some people who stumble across this site, and have never been to treatment before, and this is their first time they’ve ever considered ED treatment, and they are still very much in an ED mindset, and I can see how someone who is still in a strong ED mindset could see other people sharing emails and not including them and their ED could cause them to view it through the lens of “other people are sharing their emails and not including me because they don’t think my ED is bad enough to deserve treatment” which obviously is not the case, but I doubt that person was consciously being manipulative (and some of the older comments above were directly attacking them and calling them personally manipulative).
I think it’s important to remember that the ED does personalize things, and the ED does filter things through the lens of “this is about me” or “this means people don’t like me” or “this means I’m not deserving” and that doesn’t mean that they were intentionally consciously being manipulative, but the ED can cause people to personalize things that aren’t about them sometimes. I just think it’s important to remember that not everyone who uses this site is coming from a recovery mindset, and there are younger people who use this site, and people who are still very active in their ED or new to recovery or this is their first time even considering recovery, so they may have ED glasses on and are seeing everything through ED lenses. And it doesn’t mean they were intentionally consciously being emotionally manipulative, irregardless of how it came across. And I could see how if someone’s first time on an ED treatment recovery forum, they were called manipulative, it might turn them off from researching treatment options for a while. And there are more productive ways to kindly call someone out for a problematic comment that don’t involve personal attacks or referring to them as manipulative.
Hi! I’m a librarian who works a lot with data and digital/online literacy and personally/professionally in health and public health research and the intersections of all of the above.
You’re correct that the climate right now is not especially ‘good’ to put it lightly, and I never ever ever want to make someone feel some sort of bad feeling about being cautious with their data and practicing data privacy in ways that feel best for them (people thinking about the ways data spread online effects real life makes my librarian heart soar!), and also I want to both provide some best practices here specifically for both keeping yourself/your data safe online AND (forgive this phrasing I’m exhausted from the holidays and teaching this semester, so it won’t be exactly precise) the importance of the public communication of information especially in this kind of climate. This isn’t directed at anything you specifically said, your comment is just a great jumping off point, so I hope this doesn’t feel targeted or like an attack, I promise it’s not intended that way, again, I love that you’re thinking about your information and data privacy. I want to help anyone else reading (and all of us! because we’re all part of a larger information community here, myself included!!) approach this in a way that can keep them, us, and the flow of information, protected.
1.) Make like a slug and cover your trail. The best way to keep yourself, your information, other’s information, and any data that information contains (remember data isn’t just raw numbers, it includes things like subjective or objective qualitative measurements like reviews of treatment centers!) safe is to keep trackers at bay. Trackers can be obviously nefarious like, hypothetically of course, a hostile government, or less obvious but still insidious like advertisers or the algorithm writ large that controls the content you might see elsewhere. Clear your cache and cookies regularly, use a browser less friendly to trackers (Firefox is a mainstream one that is free to download and easy to use, but there are many others), if a VPN is available to you, use it, if not, don’t worry! There’s still much to be down to protect your trail. Deny location permission on websites, decline all but the absolutely most necessary cookies if you can, use a ‘spoof’ or ‘burner’ email here or any other websites where you may be concerned for your privacy (you can use the same burner email for multiple sites! Things like iCloud offer email masking, so do extensions like mozmail, you can also literally just create one burner email in gmail or another service like that using a name other than your legal name to send things to). There are also extensions like PrivacyBadger that will find and disable tracking elements on webpages. PrivacyBadger is free, in library school we also used one called NoScript, also free, but can make using some website difficult because of the way it stops trackers, but still a very good option.
2.) Never let them know your next move. Interact with conflicting information. Click on links for information that doesn’t pertain to you. Look up information on cities in other states. Open pages about TV shows you’ve never watched or never intend to watch. You can make your burner account a reddit page or something following all interests you don’t have. If you can’t completely beat the trackers, confuse them. This is kind of like a digital zig zag formation. Bonus, this will break the algorithmic filter bubble that’s been built for you, and you’ll start to see content on other sites like youtube or tiktok or instagram you didn’t used to see that may increase the range of information you get. You can interact with it, too, to continue the virtual zig zagging and increase the algorithmic variation.
3.) Do your part, spread (and protect) gatekept knowledge. Obligatory “I am not advocating for copyright to be broken”. Remember that information/knowledge are power and powerful. Firstly, none of us are trying to sell anything here, and none of us are incentivized by money to share a certain opinion on this website, and that’s a rare thing these days, this kind of knowledge is so incredibly powerful because it’s shared simply for the sake of spreading information and creating a self sustaining information economy (a free and fair exchange of information). Spreading knowledge that may otherwise be kept behind a gate (whether it’s because of a digital access divide, a monetary divide, a lack of un-sponsored opinion divide, an educational divide, or another type of divide) helps empower our communities. We empower each other by giving access to information we might otherwise not have in order to help us make informed choices, understand ways we may have been systemically harmed, realize we may not be alone in our experiences, and otherwise give us a glimpse beyond our own walls. By listening to each others’ stories and bearing witness to the data each of us has come by through life circumstances that are less than ideal, we empower those who share their knowledge, information, and data. United we stand, divided we fall, and that bears true with sharing and protecting information as well. The data in me honors the data in you, and so I protect it from those who might want to do it harm. Harm may come by people wanting to cut off access (by revoking access rights), bullying people into silence (by spreading the information into the wrong hands, opening people up to litigation or retaliation), or doxxing someone/otherwise removing their right to privacy. The data in me honors the data in you, and so I keep your data safe and trust you to do the same for me. This includes keeping mirrors and backups where indicated, this can be achieved through websites like archive.org, among others. Trust that many of us work behind the scenes to keep other literal public health datasets safe in the era of the scrubbed government website, and it’s no different elsewhere on the internet I’m sure.
4.) I’ve never metadata I don’t care about. Metadata is essentially data about data. It ‘hides’ in everything we do online. If you’ve ever taken a picture on your phone, and had your phone geotag the location in your photos app, you’ve experienced metadata, and if you’ve ever had a website say “Welcome Back, [name]!” you have experienced it, too (this is usually done through your cache and cookies). Your profile picture on websites where that’s applicable is technically metadata. But your metadata can be used to identify you if you’re not aware of it. Remember your geotagged photos? If you post those online, even with a burner email, a VPN, etc. those can still contain metadata and be used to identify you. Good news though, identifying metadata can be stripped from things like online documents (including word docs and pdfs) and images. There are plenty of apps and websites to do this. When in doubt, check it out, and make sure you don’t doxx yourself via metadata.
5.) Have fun, be kind, and be yourself (kinda). I mean be yourself literally if you want and understand the risks. But be yourself as in personality wise as often as you can. Help your fellow digital citizen by following the above steps, sharing when you can, protecting what you can, and just like do unto others when all else fails. We’re all in this together folks.
I understand the perspective of individuals connecting by email feeling a bit like a clique, and I certainly understand the fear of not feeling “sick enough”!
However, I don’t understand how people emailing privately relates to the severity of one’s condition. If your qualify of life is impaired, you are sick enough for
help and deserve professional support.
if you need help, please reach out to a treatment program and do not let a clique vibe deter you from living YOUR best possible life.
Hi all! This thread has been moved from the Sanford Medical Center’s Eating Disorders Unit (Fargo, ND) review page to this resources page. I have also redacted OP’s pseudonym. I want everyone to be able to continue discussing if they desire, but it has become a general discussion relevant to multiple treatment centers rather than a discussion specific to Sanford. Maybe this “questions about resources” page can also serve as a community discussion space?
i am in a unique situation with insurance and wondering if anyone is aware of tx centers willing to work with this. i have a primary insurance and secondary PA medicaid, which is there to cover the out of pocket costs. my out of pocket and deductible are incredibly high making treatment difficult to afford. looking for a tx center that is willing to do a single case agreement with medicaid to cover these costs. i have looked into a couple places but waiting to hear back. it’s so frustrating and discouraging, since a lot don’t work with medicaid 🙁
There are a fair amount of inpatient facilities that are in network with Medicaid. Typically, Medicaid does not cover any level of care other than an inpatient program that’s on a hospital. Sometimes Medicaid will cover PHP if the PHP program is located on a hospital
If you search on here using the Medicaid tag, you will find a list of inpatient facilities covered by Medicaid. I think ViaMar, Veritas, and The Emily Program are residentials that I have heard of making SCA for Medicaid
yes i am waiting to hear back from the emily program to see if they will work with me. the thing is that its not that the medicaid will cover the cost of treatment (since my primary insurance covers), but rather will take care of the copay. i’ve actually reached out to quite a few listed under the medicaid tag and a lot of them will tell me they don’t deal with medicaid. it’s really confusing.
Oh no! Do you remember which ones have said they don’t work with Medicaid? Some places must have changed their policy, so I’ll need to update their tag. But probably for some of them, the front office staff who answers the phone will say they don’t “take” Medicaid, because they aren’t contracted with Medicaid full stop. However actually they can work with Medicaid on a case by case basis. The front office staff may or may not know this. 🙂 Ask the people who answer the phone to transfer you or give you the number to the person or department that helps set up Single Case Agreements (SCA’s)
Hi Rachel, I honestly cannot remember as it’s been years of this and my memory is not the best. I do not want to give any false answers since you are probably right that the front desk likely gives the upfront answer and I usually stop inquiring after that. I’m not the best advocate for myself and this barrier is convincing me to give up seeking out help so I haven’t talked to anyone further about this. But if I know for sure some centers don’t I will let you know!
Call every single place you would be ok with going to and see what they say.
It’s helpful to download the patient policy manual AND the provider policy manual for Medicaid in your state. Go through the behavioral health section with a fine tooth comb. In 2011, I needed MO Medicaid to pay for an out of state facility because there were none in state that could work with severe trauma. Initially they denied my request, claiming they didn’t cover treatment for EDs. Using their own policy manual I proved to them that they did indeed cover ED treatment and named the specific ICD codes.
The next letter approved treatment and they paid for a residential facility 1000 miles away. It’s helpful to have referral letters from doctors/dieticians/therapists stating your imminent need for a HLOC. Don’t give up, it might take more effort but you can find a place.
Places that accept Virginia Medicare anthem plans ?
I think Reflections at Dominion Hospital does
Is there an inpatient treatment center anywhere in the US that accepts Medicare? My Medicare coverage will be starting in December 2023 (due to disability, not age, as I’m 30 but have been on SSDI for 2 years now) so I’m trying to see if that will provide me with more options for treatment.
I live in Michigan, and there are zero in-state options here for me for inpatient (currently I’m not able to seek treatment out of state, as my Medicaid will not cover that). The only way I could go out of state would be to use the Medicare coverage that starts next month, as that’s a federal program and could potentially cover services nationwide.
Also important to note that I really need inpatient services specifically, basically something like ACUTE, as I’m in very bad shape physically due to the ED. There’s a residential place here in MI (Sanford House) but I’m not medically stable enough for their admission criteria, and there’s no way I can get medically stabilized on my own with how sick I am – hence I’m searching for inpatient options.
Any ideas or help at all would be so appreciated. Thank you!
There are a few! Medicare actually generally only covers inpatient, they don’t include residential as one of their covered benefits. Rogers in WI, Sanford in ND, Princeton in NJ, Walden in MA, Alexian Brothers in IL, UPMC in PA, Tower Behavioral Health in PA, RWJ Somerset in NJ, Sheppard Pratt in MD, Johns Hopkins in MD, River Oaks in LA, Reflections @ Dominion in VA, Reasons in CA, Alta-Bates Summit Herrick in CA, Lindner Center of Hope in OH. They are of varying quality but certainly more options than trying to find treatment with Medicaid in Michigan, which is a treatment desert and truly terrifying.
Thank you so much for this info! I will research those places and hopefully one of them works out.
Does anyone know of an ED inpatient (for medical stabilisation – kinda like ACUTE) which accepts vegans and medicaid insurance? I don’t need this currently, but am trying to figure out my options should I need it. Really don’t want to be in the position where I’m trying to find something in the moment. I will not eat animal products. Period. The end. I keep hearing about ACUTE being the best for medical stabilisation and re-feeding, but they don’t take medicaid. And there’s no way I could afford that out of pocket fee. Hoping to avoid this situation altogether, but also would like to be prepared, just in case.
What state are you in? Medicaid is usually specific to your state.
NY. I already tried the outlook at Westchester through NY Presbyterian, but it was so bad I would never go there again. And it isn’t even a proper hospital…the only doctors you see regularly are psychiatrists, so not really what I’m looking for, anyway.
Bumping this! I’m trying to go through my notes and see if I find anything. You have New York State Medicaid, correct? Check out Strong Memorial in Rochester, they take Medicaid and according to one of the recent reviews they will let you be vegetarian/vegan as long as you drink milk (not sure if you can do a vegan supplement for it): https://edtreatmentreview.com/strong-memorial-hospital-golisano-childrens-hospital-ny/
UCLA’s Medical Stabilization Program accommodates vegans! I think they only go up to a certain age, but I suspect if you were to admit through the ER they might make exceptions: https://edtreatmentreview.com/ucla-ed-program/#comment-26247 However, if you have NYS Medicaid, you’ll have to get a single case agreement to receive treatment anywhere outside of NY.
Even if they accommodated vegans, ACUTE flat out refuses to take Medicaid or do single case agreements for people with Medicaid. They won’t even accept people who are on Medicaid even if they have another insurance too. If you have been on Medicaid in the past three months, they won’t accept you until you’ve reached that three months without it mark.
Veritas inpatient/residential does do single case agreements with NYS Medicaid, as does the Emily Program residential. I know you are looking for hospitals, but TEP absolutely takes ethical vegans. (Veritas does not.) As someone mentioned elsewhere Alsana residential also accommodates ethical vegans. Not sure about single case agreements with NYS Medicaid. However I would say TEP residential would provide a higher level of care than Alsana residential anyway.
For the record I think the fact that almost all hospital medical stabilization programs refuse to stabilize ethical vegans is IN AND OF ITSELF unethical. That is not the time to challenge someone on the root of their veganism. That is the time to save their life. It is not their role to dive into your core beliefs and core values, to parse them, to make theories about your history, your background, to psychoanalyze you, to determine for you your future by determining for you your past. I mean come on, they aren’t therapists they are doctors. Their role is to save your life and stabilize you enough for you to be able to go to a treatment program that is actually designed to do those things.
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TYSM! I’ll look into those hospitals. Milk is especially tricky for me (more so than yogurt) because I have lactose intolerance, so it causes physical symptoms, in addition to my moral quandaries with supporting cow exploitation. But if they could do a vegan supplement, or soya milk (which is nutritionally on par with cow milk), then I could do that. I’m not young, so I’m probably outside the cutoff for UCLA, but I’ll look into it.
I didn’t realise that ACUTE refuses medicaid patients…definitely off my list then. Alsana doesn’t take my insurance, but I’ve already spoken to admissions at TEP, so I know they’d accept medicaid and vegans.
Thank you for what you said about IP programs not accepting vegans. I couldn’t agree more, and it’s really nice to hear I’m not alone. I get the sense that a lot of the mindset towards vegans is quite outdated. Veganism, nowadays, is not restrictive. There are vegan equivalents to every animal based food on the market. I can buy or make vegan Ben & Jerry’s, sour cream, bacon, omelettes, cheese, yogurt, etc. Every restaurant has a vegan option. It’s not like a fruitarian or raw food diet, but it’s treated as such. It is pretty frustrating. I’m hoping that more hospitals will change this “no vegans” policy in the near future, as plant based diets become more and more mainstream. I think it’s important for them to know that they are literally denying care to these patients. After all, they usually accommodate Jews and Muslims for their values, as well as vegetarians. Why are vegans left behind?
I’m very much hoping to avoid the need for this altogether, but right now, I’m thinking that if I can’t find a single suitable IP program, then I might just utilise the local hospitals where I live, should it come to that. As of fall 2022, all of the food at the hospitals where I live is plant based (you can ask for meat, dairy, eggs if you prefer). I don’t think it’s ideal, because none of these hospitals have ED units (where specialised care is provided by experts in the field), but I think if I really needed medical stabilisation, they’d keep me alive.
Alsana would not accept any Medicaid or SCA through Medicaid as of 2019. Not sure about now.
I was in treatment at Alsana last year with someone who was dually covered by Medicare and Medicaid via Kaiser and one person who had straight Medicaid from San Diego. They do accept it. There was also a woman who was retired with Plan C Kaiser Medicare.
Not from my state.
Albany Med does this. They recently updated their website with info.
When you are ready to step down, Sol Stone’s PHP accepts NC Medicaid and honors veganism.
Fantastic list of FREE virtual support groups created by Niki at Umbrella Psychotherapy:
https://docs.google.com/document/u/0/d/11IsP3yKZlUwW_hP4180BFLN8dOFvy6faxiTwCkZ6x4Q
Does anyone have a recommendation for a doctor (not ACUTE-hopefully, somewhere on the east coast) that is well-versed in Superior Mesenteric Artery Syndrome?
**names can be used when replying to elle’s question here! (and names are indeed encouraged in this instance, to help facilitate access to care for her!) – admin**
Not a doctor recommendation, just personal experience with SMAS. I’ve seen several GI’s since 2020 and what’s been said about this condition is the cure is weight gain. Surgery was never recommended as at all 3 different GI places I went the doctors said it usually isn’t effective. Beth Israel in Boston is good for GI care if you live around there.
Does anyone know of a good ED medical doctor in the Dc metro area?
any resources for pregnant patients at a normal weight? looking into res, as my relapse is quickly becoming pretty severe. i’d like a place that has some specialty in pregnancy (specifically high risk.) I don’t think i’d do well in an OP setting.
Hi everyone, I wanted to share a free peer recovery group being offered for adults. All meetings are virtual. It is based on the model of 12-step programs but is more explicitly feminist, anti-racist, and lgbtqia+ aligned and allows people to define their own steps.
I know a lot of us, especially in adults, don’t have the finances, time, or other resources for formal treatment…I’m hoping this might resonate for you if you’re looking for recovery that is based on YOUR values.
Peer-led, but with a script and guidelines so participants are safe and things don’t get too triggering. Groups include sharing positive steps. milestones, group readings, time for reflecting/journaling/art, and sharing. Open to any adult (18+) who wants recovery from any eating disorder, disordered eating behavior, body image obsession, etc.
http://www.manyroadsedrecovery.com or manyroadsedrecovery@gmail.com for more info.
I got an email saying that the general ED support group is back at Liberating Jasper 1st and 3rd Mondays. The Liberating Jasper groups are the best online support groups I’ve ever attended, especially the Queer and Neurodivergent groups. They aren’t free, they’re $7, but they offer scholarships if needed.
Does anyone know of a resource to find eating disorder specialized primary care doctors?
I asked my care coordinator for my insurance. She had a list of about 5 doctors who were compassionate, maybe not ED doctors but willing to work with patients who suffer.
Contact ayeleth.org. I believe they have a database.
There are supports that aren’t part of any level of care, such as recovery coaches and peer support from ANAD, meal support, support groups, and 12 step programs like EDA. Many of these are available online and are free or low cost. I had an idea to see if community members have experiences using any of these supports and want to share about it. For me, not knowing what to expect is a barrier to trying and I’m interested in the perspectives and experiences of people with EDs who’ve used the supports. It could be encouraging and motivating to try something new that is accessible to many of us.
Love this question and I’d also be interested in hearing people’s experiences. I participated in the free mentoring program through EDF and had an awesome experience because meeting with my mentor was so helpful. You just complete the application when it opens (I think it only does so about four times a year or so and it’s very doable, it didn’t feel too long nor too short) and then after you fill it out, you’ll have an interview with a staff member and they’ll try to match you with a mentor with whom you’ll meet once a week for about eight weeks. I think they normally have more mentees than mentors so they can’t match every applicant every round, but personally I was so grateful that they matched me with someone who was such a great fit.
Hi 🙂 I’m a support group leader for ANAD! I can only speak for the groups I run, but I would characterize them as a generally recovery-focused, supportive space. All ANAD leaders are recovered ourselves, and we go through a fairly extensive interview and training process.
The groups typically run something like this:
5 minutes: guidelines (confidentiality, no numbers, etc) and leader + co-leader introduce themselves and give the check in question (which could be highs and lows of the week, what’s on your mind, something you’re looking forward to, why you came to group tonight, etc — different each time))
10-15 minutes: check in (everyone shares first name + last initial, where they’re located, pronouns, and their answer to the check in question)
40-45 minutes: open discussion (ANAD groups are open spaces for people to bring their challenges and successes, ask for guidance/ideas, get resources, and connect — the leader and co leader are there to help guide the conversation if needed and can hop into a breakout room with someone if they’re feeling activated… I’ve never personally had this happen, but it’s an option)
10 minutes: check out question (what’s something you’re taking from group tonight, what’s the next best thing for you to do, what’s your intention for the week, etc)
It’s pretty cool how diverse the range of people who attend are. Anywhere from young teens (in the teen group) to people in their 60s or 70s. All races, socioeconomic groups, religions, etc. We even have international attendees pretty often! Many weeks there is an attendee who is not even sure if they have an eating disorder, but who is concerned enough to want to check it out and see if it resonates, as well as people who have struggled for many years and/or had long treatment histories.
The groups are free (though donations are always welcome as they allow ANAD to keep doing this work) and open to anyone. You just have to pre register under the Get Help tab on the website (https://anad.org/). You can also see info about the mentorship program and the hotline. Fun fact: One of my fellow group leaders had also been an ANAD mentor several years ago. One of her former mentees from back then is now recovered and volunteering as a group leader!
If you’re considering joining us, I truly hope you’ll give it a try! I wish I had known about these groups when I was sick because the sense of community is pretty awesome.
So these are virtual groups? (I see mention of “breakout rooms,” which I know is a Zoom term?) And from what it sounds like, you have to be physically ON camera the entire time?
Just wondering because for the Alliance virtual groups, you do not need to be on camera, which really helps me, but I understand why that wouldn’t always be the case.
Thank you!
For ANAD groups you don’t need to have your camera on which also helps me, but depending on the group leader they do sometimes make you do the check in aloud which can be hard if you’re not feeling up for it. Some other ANAD group leaders give you the option to answer the check in questions in the chat which I appreciate, but I don’t like that there isn’t consistency across the board on that. The Alliance groups often feel really big and overwhelming with the same people talking every time, but IMO the ANAD groups are smaller and there’s usually a chance for most people to speak during the group if they want to.
Hi 🙂 Yes, they are on Zoom! We encourage, but do not require, having cameras on. I definitely think it helps the groups feel more connected, but we totally understand that not everyone is willing or able to do that! I think my groups are probably half and half? We also generally cap the groups around 20 attendees (sometimes a few more than that slip in but we keep it smallish) to allow everyone the chance to talk. I’ve had weeks where like 5 people show up, and weeks where the group is huge.
As far as not checking in out loud, I would recommend shooting the leader and/or co-leader a message letting them know that you aren’t up for talking or are somewhere you can’t talk. Just send them your name and location for ANAD’s attendance records. This should be fine! What we don’t love is silent viewers who never share their name or any info with us. We at least want a record of who is there, if that makes sense?
Wow, all of this is really helpful. The only step I’ve taken so far is creating a Zoom account a week ago. I’ve constantly avoided all virtual groups for fear of being forced to have the camera on.
Is there anyway to find out how large the group will be before committing or do you just leave if it’s too big for you? 20 people is a no for me. Also, are all groups either adolescent only or adult only? From experience, mixed age groups are a no for me.
We don’t know how big the groups will be in advance, but I can say that the 12pm EST groups tend to be smaller? If it feels too big, you can always log off or just message the leaders to let them know you won’t be talking.
Most groups are adults only. We do have one group for “adolescents and young adults” on Tuesdays at 7pm that is teens and folks into their 20s (often college students who want to be with a younger group). But for the most part, teens and adults are not in the same group!
Great work making that Zoom account! Small steps forward ?
Ok, thanks. Next step is looking at those midday groups.
So these groups have teens and adults in the same groups? Are there any that are only adults? Seeing teenagers is super triggering for me. I struggle with the competitive part of ED, so avoiding seeing other people with ED helps me. Is there a way to not see any of the people in the group or only hear the discussion?
Do people discuss behaviors or only feelings? I’m not sure if a group is a good idea if I have zero outpatient support. My therapist is for panic disorder, and the clinic doesn’t address ED. I was rejected by the only ED therapist I could afford.
Most groups are adults only. We do have one group for “adolescents and young adults” on Tuesdays at 7pm that is teens and folks into their 20s (often college students who want to be with a younger group). But for the most part, teens and adults are not in the same group!
You can use the “stop incoming video” feature on Zoom to turn off other people’s videos. Instructions should be available online for that! You can also always just flip your phone over or turn your computer around so you don’t see them.
Behaviors can be discussed. One of the communication guidelines is to use only clinical terms when talking about them and to avoid using numbers or quantifying anything, but you know best whether or not that is approachable for you!
I have a few other resources for you that may or may not be useful. Take what you like and leave the rest 🙂
https://findedhelp.com/ — search for ED specialists by insurance plan
https://anad.org/get-help/treatment-referral-request/ — customized referrals from ANAD staff/volunteers based on location and insurance
https://openpathcollective.org/ — co-op of therapists who provide low cost sessions
Thank you. I did look at openpathcollective, but since I’m on SSDI and can’t afford rent let alone utilities or other living expenses, spending $ on therapy isn’t an option.
I’d used the alliance for ED treatment finder in the past, but my GI refuses a dietitian referral and since all foods don’t fit for me and I can’t drink the types of oral supplements at treatment or afford the deductible for treatment I’ve given up on traditional methods. I was open to giving residential one last shot right in 2019, but wasn’t able to afford to get there. I developed mobility problems and failed IOP a few months later, began much more treatment resistant, then developed GI infections that Fall. My family doesn’t think treatment will do anything for me since I never fully recovered and have been 4x in the past. My parent insists I can figure it out myself. Because I haven’t been eating in front of anyone other than my family in a few years I don’t think I’m appropriate for treatment anyway. I did make some improvements in 2021 with an outpatient dietitian and my GI and parent seem to have zero understanding that I need that accountability…I’ve tried explaining to my parent a dozen times and they either don’t listen or believe they know more about the illness *shrug*
I’ll take a look at the findedhelp by insurance plan, but was already rejected by an outpatient ED specialist. Many refuse you if you don’t have a dietitian, too. I’m going to ask my PCP today why I was rejected because she’s the person who talked to the ED specialist and once she did, the ED specialist emailed me to say she wouldn’t work with me.
I have tried out the virtual meal support group with Dr. Daisy. Currently, there are (2) available each week: Tuesday dinner and Thursday lunch, $20 each group.
It’s not “clinical treatment” but “supportive care” and she requires a free 15-min info call before you sign up, which was very helpful.
https://www.drdaisy.com/group-lunch-support