Help Jessica get Eating Disorder Treatment ❤️

UPDATE: THANK YOU!

To all who have donated, thank you so much! Because of you, I can make this happen at least to some extent. While we cannot do the full treatment, I will be doing 1.5 weeks of live in treatment starting later this week! I could not have done it at all without the help from all of you. I am very grateful.

As this round is going to be pretty short, we are hoping for a short refresher later this year to provide continuity. I have lowered the goal, as we are no longer planning to do the longer treatment, but still need more support on this current one, help covering my increased rent (in order to keep the rooms open, my expenses have been approximately $4k just in rent so far to cover the extra rooms) and expenses, as well as food and transportation for my therapists.

Also very much welcome any gift cards for groceries, restaurants, metrocards, etc, as food expenses will likely be higher on an increased meal plan.

I'm excited to give this a trial run!

We are not putting pressure on for it to "work", as it is not a cure, but hoping for anything that helps, from increased connection, morale, and building more pleasant experiences with food, all of which are invaluable to recovery and well being overall.

ORIGINAL POST:

I've been putting this off for a long time. I prefer to give help where I can, and asking for direct help -while i have done it in the past- is not in my comfort zone.

Nor is admitting how much i am struggling.

As much as i try to combat stigma and stereotypes when i speak about my own experience, and about eating disorders in general, i still struggle with my own internalized ableism, and can find myself judging myself where I would never judge others.

I hope if I do share this, and ask for help, others might be more open to doing the same for themselves…opening up and asking for support in whatever way feels necessary and accessible for them. Or at the very least, realize they are not alone in this.

The short version, for those who don’t want all the details:

I really need an in-person higher level of care - residential level - for my eating disorder, which manifests as ARFID and anorexia.

Recovery has been complicated by late-diagnosed autism, ADHD, treatment trauma/C-PTSD, and medical issues (both related and unrelated to the eating disorder, as well as post-Covid). It's been harder and more exhausting, and I have been in serious burnout, with medical issues popping up one after another in the last year.

While I have the opportunity to do a very individualized treatment that would take all of these factors into account, it is financially inaccessible, and I need help with funding to make it happen.

I would have an extended period of full-day, in-person support, with ED/ND specialists who are neurodivergent themselves, who I have already been working with several times per week for the last 4-5+ years. Therefore, it would be 100% individualized. It would be an intensive, difficult process, which both scares me, and is something I want and need in order to both move forward with the eating disorder, and have more ability to combat existing medical issues, and prevent further complications as much as possible.

Now for all the words (because “brief” is not my style):

About me:

Hi! My name is Jessica Mellow.

I am an autistic/ADHD human, probably also part reptile (chameleon), who often feels like a bit of an alien. I have had the chance to take on those reptilian and alien forms, among many other bodily forms over the years, through my favorite art - bodypainting and fx makeup. I have apparently been an adult longer than I was not one, yet often question whether my adulting license was erroneously issued by a now-fired newbie at the Department of Humaning. My blood is approximately 83% coffee, and I almost always have a coffee cup with me, because that's my emotional support coffee cup, and no I will not throw it out. I have the world’s best spork collection, until someone proves me wrong, and a tortoise child who looks just like me and currently lives with my family. My family is awesome, and I would not trade them in even if I could find the number for customer service. One of my favorite things is hugs, and they get very heavy to carry around, so I always love sharing them.

As many artists, autistics, and humans do, I have a complicated relationship with my brain and my body. We do not always see eye to eye. Brains can be tricksy little hobbitses, and bodies can be confusing…there are SO MANY PARTS. Bodies are amazing, and amazingly complicated.

I have been struggling with an eating disorder (anorexia nervosa and ARFID- Avoidant Restrictive Food Intake Disorder) for about 22 years. I was originally diagnosed with and treated for anorexia at 17 years old, and only more recently realized that it was more than that, which explained a lot.

Turns out ARFID and anorexia require very different approaches, and when ARFID is treated as anorexia, it can backfire. Autism changes the way treatment needs to be delivered, as well. Something that works well for a neurotypical person may be unhelpful, or even harmful, to an autistic person. It takes extensive understanding of nuance to treat ARFID when co-occurring with another eating disorder, detangling the brain like a knot in the hair...sometimes one strand at a time. Believe me, I have spent more hours of my life that I'd like to admit detangling my hair, and even more trying to detangle my brainspace.

I am also a medical and psychiatric abuse survivor, having received treatment in the past that ranged from direct abuse, psychiatric and medical malpractice, to other treatment that was more well-intentioned, and may have been good for a non-autistic person. Therapy is meant to help a person learn to accept who they are, and instead I left each treatment feeling more dehumanized, isolated, and ill, which led to a full decade avoiding all medical and therapy providers. I spent years afraid to even visit people in clinical settings.

Having PTSD directly from treatment - treatment trauma - has complicated my recovery more than I thought possible, making it nearly impossible to make progress in a traditional setting. While I have experienced multiple forms of trauma, the medical and treatment trauma have affected my life more than any other, on a daily basis, and made it hard to trust anyone with my healthcare. Luckily, I finally found providers I do trust, but just as I started making a little progress, everything went virtual in the pandemic, and I (like many others) spiraled.

Since the pandemic, I have been putting all of my energy into staying afloat. I have multiple individual appointments per day, every day. I also attend multiple group supports, where I have managed to find and connect with many other autistic people with eating disorders, survivors of psych abuse, and others who are passionate about changing how eating disorders are conceptualized and treated, especially for those in marginalized populations within the ED community - people in larger bodies, BIPOC, LGBTQIA+, Autistic/ADHD/Neurodivergent, disabled, low-income, etc.

It’s heartening to see others fighting for inclusion and support in a broken treatment system, and scary to see how much needs to change before it is safe for people with marginalized identities to seek help.

With affirming providers, I have made progress - some progress that I've never managed to make in the past, progress that I am really proud of. I have been able to expand the variety of foods I eat, after many years of limiting to only a few different foods. I have been able to eat in public, and with family and friends, after years of only eating alone. I’ve learned more about how sensory processing differences intertwine with my eating disorder, and how to evaluate what is sensory vs disordered vs autistic traits vs simple preference. I've learned a lot about trauma (my own and in general), as well as how autism and ADHD show up in my life, and how to work with my processing instead of against it.

That’s only a fraction of the things that have improved, AND it's not enough to make the more significant changes i need to make and still deal with the psychological aspects of the eating disorder and treatment trauma, and not enough to combat the number of medical complications that have increased dramatically since having COVID in 2022.

My body hasn’t been able to fight things off as well as it used to, and just the last year has involved dealing with candidiasis, COVID, paralytic ileus, a broken foot, tooth infection, pericardial effusion, hypermobile Ehlers Danlos, chronic pain, dysautonomia, multiple non-COVID viral infections, ulcers, kidney stone, iron issues, a few day bladder shutdown, and other fun body obstacles, along with overwhelming fatigue a lot of the time. While not all of these are caused by the eating disorder, all are affected by the complications of long term restriction in one way or another.

I have a great team, the best I’ve ever had. Each of my clinicians has done the work to learn and grow with me over the years, adapt for my needs, question the systemic norms, advocate, and overall gone above and beyond to accommodate. Even so, we have realized the level of support I need is not possible at the outpatient level, especially virtual.

Recently I have also had a drop in the number of meal supports due to availability, when I was already treading water at the level we were at. I am afraid if I keep going at this level, I will continue the cycle of treading water and burning out. My team agrees, and all doctors are in full support of this higher level of care.

Traditional eating disorder treatment costs up to $2500+ per DAY ($40-75k per month), making it inaccessible to a lot of people, and is often not individualized, or made to accommodate the needs of anyone who does not fit into a box. So even if my insurance would cover that level of care in a traditional setting (they will not), it is not what I need, and would potentially do more harm than good.

The treatment I am seeking:

The treatment program would entail an individual residential-level of care, with my own therapists/coaches, and medical team. I would stay with two of them, and would have direct support in making bigger changes, as well as the ability to work through sensory overload and trauma responses in the moment. We would likely consult with an ARFID specific dietician, and an occupational therapist specializing in sensory integration. I would see my own medical doctors, who know me and my specific presentation very well. They have offered to see me more frequently during that time to be sure things are going smoothly, and monitor closely for any potential complications.

This can not be covered by insurance, and i have already tried to apply for scholarships, so this is my only option for making it happen. While it will not be nearly the $2500 per day of traditional treatment, it is going to be a lot more than i can afford due to overhead costs, and I really need help with the expenses. The same level of funding that would cover one month of traditional residential would allow a more extended and tapered approach here, with followup "refresher" visits.

The bare minimum time for residential care is one month- preferably more- plus the ability to do "step down" levels of care. For this, we would need pet-friendly AirBNB or other temporary housing in NYC (a 2-3 bedroom apartment), plus airfare for the therapists who are coming in from out of state, food, transportation, and salaries.

We set the goal at $50,000, as that would cover all expenses, and allow for adequate step-down care, along with the ability to troubleshoot as needed. Realistically, we could at least get it started (hopefully sooner than later) long before reaching that goal, and extend as we are able, so truly, any amount is appreciated. Anything beyond the goal would allow for extended care, as well as ability to focus on healing rather than just staying above water.

I am hyper aware of the impact the pandemic has had on people's work, finances, health, and ability to contribute. I know so many of my friends and acquaintances are also struggling with their own mental and physical health, and may be experiencing barriers to receiving the care they need for one reason or another. I want to remain cognizant of that. Any and all contributions are beyond appreciated, and not expected.

Back in 2017, i had to swallow my fear, and asked for help accessing a different form of treatment. Donations toward a one-week program quite literally saved my life, and I have never been more grateful or humbled by the support I was shown. While the time frame limited the progress I could make, it did what nothing else had done at that point. I was in a downward spiral, after a decade of avoiding all doctors and therapists due to PTSD. I felt so much shame for where I was at, and was instead treated with compassion, generosity, and kindness, for which I cannot, to this day, adequately express my gratitude. It slowed that downward spiral and gave me the space to stabilize, orient myself, and evaluate the next steps.

I owe SO much to each person who helped make that happen, and can only hope my gratitude was seen and felt. One of the things that I love most is the people in my life. I have had the fortune to be surrounded by some of the best humans, and that is something I never take for granted.

In the past, I have shared a lot of my struggles and progress. I have been quieter in the last few years, mostly due to increased burnout since the pandemic. Also due to being much more active on the inside...I have been doing advocacy, training, and applying for additional supports. I would be happy to share more openly/frequently if people were interested and wanted to hear more. I know I've been less communicative recently, and hope that is never taken personally. I would love to be able to communicate and participate more, and am constantly evaluating my battery level. (So for those I have not been in contact with, it is due to my own exhaustion and getting behind in everything, never personal, and I still have so much love for each human in my life.)

I first sought treatment over 20 years ago, hoping the eating disorder would be something i was able to put behind me. Instead, I spent the following 4-5 years living in and out of hospitals and treatment programs, worse off each time, and feeling more hopeless.

That program in 2017 was a turning point for me. While it didn't solve the issue, it slowed my decline, gave me more understanding, more hope, and more tools. Something that stuck with me was when they said "This is hard enough, we want to make it as pleasant as possible." That felt so compassionate.

Since then, I have made leaps forward in ways. I learned I am autistic, which not only explained why past treatments were more harmful than helpful, but also made my entire life make more sense. Realizing I was autistic this whole time was the best news of my life, and looking back is like the Sixth Sense...there were so many obvious clues the whole time! It really did feel like the key to feeling like I could potentially move forward.

I began individual meal support, which was a game changer for me, where I have challenged myself in ways I couldn't previously imagine, and formed relationships with people who I now trust more with my eating disorder than I have ever trusted anyone.

I worked 19 months with an amazing trauma specialist, who agreed to see me for a very generous sliding scale, and adapted well for the autism. She said our work was like treating a soldier for PTSD on an active battlefield. She was like my FEMA tent, and our work together allowed me to engage more effectively with my eating disorder treatment team. One of the main things I got from our work was that while we thought the goal was to "unblock" the ED, what I got instead was the realization that I am a full human being regardless of where I am in the recovery process.

I have advocated for myself and others in my position to be heard, for treatment to be adapted, for our voices and lived/living experience to matter as much as (or even more than) degrees.

I've done my best to support others through the autism diagnostic process, as well as through their own recovery process, and have tried to help others access treatment and other supports where I could.

I have developed and presented training for professionals on adapting eating disorder treatment for autism and ADHD, which has felt incredibly challenging and rewarding.

I have been working for the last several years with a team of therapists and coaches who have shown a level of dedication and care that I never had in the past. Not afraid to learn, change things, adapt where needed. Not afraid to be called out, have hard conversations, work through miscommunications and ruptures, and advocate for their clients' needs.

I have an eating disorder specialist PCP, and other specialists (GI, nephrologist, physical therapist) who are trauma and eating disorder-informed, and disability friendly.

For all of these things, and all of these people, I am incredibly grateful. It's also why I need this higher level of care. To get to a place where I can make the best of what i have, while I have it.

This has been the hardest thing I've ever done in my life. Since the pandemic, especially, things have become much harder.

Three and a half years ago, I asked one of my clinicians what it would take to get her for a full day. She thought it was a rhetorical question, and answered as such.. but it wasn't rhetorical. I wanted to know what it was like to have full-day support with someone I had built trust with around food. I trust people very easily, but not with my eating disorder. Treatment had been mishandled and dropped so many times. It kept building in my head, feeling like what I needed was a residential level of support, but with the people I already felt safer trusting with my eating disorder. A space to make certain steps that in the past have been done in a punitive and violating way, in a way that would be kinder, affirming, and repairative.

Now I have the chance to make that happen.

I would be thankful for any donation, share, or other contribution. I would also like to pay it forward, and plan to use what I learn as a basis for helping support other autistic people with eating disorders get the care they need. I am also always open to any questions asked respectfully, and will answer to the best of my ability. I also have a lot of resources, if you or anyone you know is looking for support - peer support, groups, coaching, therapy, and higher levels or care...or even just information. I am always open to helping where I can.

Whether you can or cannot donate, if you have read this far, thank you for reading. The one thing I have always asked and hope for when I have opened up more, is that any empathy or compassion directed at me, be also directed to others struggling with eating disorders. To never judge a person's state of mental or physical health on their body size or appearance...there is truly no "look" to an eating disorder.

Regardless of where someone is in their non-linear process, they deserve support, empathy, and the ability to be seen and treated as a full human being. This is often so much harder and more complicated than people realize.