Tomorrow is the beginning of NEDA week and I don't really want to talk about my eating disorder. Y'all know I've struggled with a restrictive eating disorder for years, y'all know I was in treatment all summer after a severe relapse that nearly killed me starting this spring and may know I almost went back to treatment in the fall. I'm doing okay right now. I've gained some weight. I'm accepting that. Things are better on ED stuff than they've been in a long time and honestly it's so freeing. Yeah, other stuff isn't perfect. But this at least is better. And that's something. I think that's all you need to know from me.
What I DO want to do is uplift a few resources and groups who are doing incredibly needed work for marginalized folks who have eating disorders. If you're part of a group that doesn't fit the norm of young, cis, white, upper middle class women, you'll know what I'm talking about. I will also call out some of the issues in eating disorder treatment and offer some suggestions both to patients and to staff/programs who probably will never see this.
First, I want to uplift the work of Gloria Lucas' amazing project, Nalgona Positivity Pride, which focuses on BIPOC, queer, and fat folks. They often hold webinars focusing on topics like the relationship between white supremacy and eating disorders, religious trauma and white supremacy and eating disorders, harm reduction, etcetera. They also have a closed support group for BIPOC folks called Sage and Spoon. Please check out Nalgona Positivity Pride here - they also have a rad Instagram:
https://www.nalgonapositivitypride.com/
Next, I want to uplift the work of the FEDUP Collective. FEDUP stands for Fighting Eating Disorders in Underrepresented Populations, and they focus on trans and intersex folks. They have a Facebook support group, online support groups, and also do advocacy work, research, and education. They have a specific fund for supporting trans and intersex people of color to afford needed services which they call the TIBIPOC Fund. There's info on their website if you want to donate or need help. You can check them out here - they are also on Facebook:
https://fedupcollective.org/
I also want to take a minute to uplift the work of Sonya Renee Taylor and her book, The Body Is Not an Apology. It is a fantastic resource on radical self love. I worry that sometimes folks distance themselves from her calls to action against white supremacy and only focus on the book, so I am encouraging you all to also follow her on Instagram and watch her videos and grow in ways not limited to the book. This is Sonya's website:
https://www.sonyareneetaylor.com/
And this is the more community based website for The Body Is Not an Apology:
https://thebodyisnotanapology.com/
This isn't necessarily a resource but I want to push back on some stuff that we hear in treatment settings and offer some alternatives. The suggestions are not complete. Feel free to add your own.
EVERYONE CAN ACCESS TREATMENT IF THEY WANT RECOVERY:
Eating disorder treatment is expensive and many residential, PHP, and IOP programs explicitly exclude medicaid and medicare. I have been incredibly lucky that because of my disability I have been able to stay on my mother's insurance, otherwise, I would not have been able to get treatment last summer (even though they cut me way early lol). Saying that people can get treatment if they just ask is untrue and harmful. And the amount of people who I know were told to ask family members for help paying is truly shocking and offensive. In many cases for folks who have been asked that, our families don't have money either. Intergenerational poverty is REAL and is a risk factor for eating disorders.
-Try to secure a treatment scholarship from the program or from an organization that helps with that.
-Learn eating disorder harm reduction strategies. Nalgona Positivity Pride has a webinar focusing on that on March 18.
-Ask for community support. Have meals with friends (on zoom for now if necessary) and hang out for an hour or two after the meal for accountability. Come up with a plan for who to contact if you're having urges.
-Stay with a friend if necessary and/or have someone with you at all times. They need to know what is going on, what to look out for, and who to contact in an emergency. This is not ideal, but if you cannot access an appropriate level of care, it's better than being alone.
EVERYONE CAN FOLLOW A MEAL PLAN IF THEY ARE COMMITTED TO RECOVERY:
Additionally, and I've seen this happen multiple times in PHP programs and IOP programs, not everyone has stable access to food. This can mean folks are not able to follow a meal plan. Instead of penalizing folks or recommending a step up, why not help folks find community based resources to help them survive? Why not be part of pushing for change so folks DON'T experience food insecurity? This is a rhetorical question. I know why.
-Get connected with mutual aid groups and food pantries to make sure you can get food if your food stamps don't cover it.
-Ask friends for help cooking. Even if they don't live with you, they could help with meal prep and drop it off for you.
-See if any services in your area offer, or if any friends will help with, grocery shopping, espect if you're prone to getting overwhelmed.
EVERYONE CAN ACCESS OUTPATIENT DIETITIAN SERVICES:
Similarly to my first point, not everyone can access an outpatient dietitian. While many insurance plans may cover dietitian services, many dietitians do not focus on eating disorders and can cause harm. Many eating disorder dietitians do not take insurance or only take more expensive plans. This is not accessible to many people.
-Try to find a dietitian who offers a sliding scale. I know FEDUP offered a dietitian matching service which allowed you to specify if you needed sliding scale. I don't know if there's other resources similar to that but I would hope so.
-Try to get at least one session with a dietitian, explain the situation, and get a meal plan. It's okay to work up to it if it's too much initially, but if you can only afford one session, knowing what you should be eating is the priority.
-Barring that, try and talk to people in recovery about meal plans. Yes, this will not be personalized to you and would not be ideal, but it could give you an idea of something to work towards. I specifically say people in recovery because much of society engages in disordered eating habits.
TREATMENT NEEDS TO COME FIRST AND IF YOU AREN'T PRIORITIZING IT, YOU AREN'T PRIORITIZING RECOVERY
This is such bullshit honestly. People have to prioritize survival and if that means they can't be at treatment or have to discharge early for some reason, be it needing to work to keep their housing, or be it to find housing after being left homeless, or needing to care for a child, or anything of that nature, that does not mean they don't care about or prioritize recovery. Not everyone is able to spend as much time in treatment as is ideal. I was told to go home to an abusive situation after getting kicked out of treatment housing for self harm in 2015. I didn't go back to that situation because what the fuck that shouldn't have even been a suggestion, and then got in trouble for missing groups because I was TRYING TO FIND A PLACE TO LIVE after they literally left me homeless. That's fucked up. Yes, treatment is A priority. But it cannot be the ONLY priority for a lot of people.
-Offer more flexibility in times and hours of programming.
-Don't penalize or guilt trip people for needing to prioritize something over treatment.
-...please don't make anyone else homeless or tell people to go back to abusive situations.
WE MADE A STATEMENT ABOUT BLACK LIVES MATTER, SO WE AREN'T RACIST
I hope this one is self explanatory. But if it isn't. Making a statement is empty words when countless BIPOC folks have brought up issues in treatment. Every person of color I have been in treatment with has experienced microaggressions if not outright racism in treatment, which has not been dealt with with the seriousness it deserves. Staff asking folks not to discuss "political topics" when those "political topics" are directly impacting the lives of folks in treatment is also not okay. Obviously people have different political ideology and that is not what I'm talking about. I'm talking about labeling real shit like the BLM protests, racism, transphobia, and fear due to policies as simply political topics when they're not. Eating disorder treatment cannot be apolitical when so much of what causes eating disorders, especially in marginalized communities, is related to structural issues, such as structural racism. And no, hiring a few therapists or people in leadership roles who are BIPOC doesn't fix that.
A few suggestions based on what I have heard from friends and folks online:
-Learn about the intersection of racism, historical trauma, and white supremacy in terms of their impacts on eating disorders. While these things will absolutely impact BIPOC patients the most, it also will impact white patients. White supremacy harms everyone.
-Change policies about what can be discussed. People should be able to speak about what is impacting their lives even if it is "political." Again, eating disorder treatment cannot be apolitical.
-Don't hire people of color and put them in lower roles. Revamp the entire structure. Put people who have diverse life experiences in charge. I mean poor people, I mean people who have lived experience of eating disorders, I mean folks who experienced racism in treatment. Things will never change if the organization is run mainly by white capitialists whose motivation is profit.
-Make closed groups so BIPOC folks have space to speak about their experiences.
-Listen to Nalgona Positivity Pride.
WE HAVE GENDER NEUTRAL BATHROOMS/A QUEER GROUP/ETC SO WE AREN'T TRANSPHOBIC
Again, I would hope this was self explanatory. But if it is not. In my experience in treatment over multiple years, the gender neutral bathrooms would be locked when the women's was open. That is a microaggression. People in groups were allowed to make a joke of pronoun rounds. People were verbally aggressive due to not believing in non-binary people. I was literally asked to EDUCATE STAFF about trans issues on multiple occasions after I was having a really hard time due to microaggressions or outright transphobia from other patients. None of that is okay.
Honestly I'm still really mad about having to literally present on trans issues to staff as patient like 5 years ago so I'm not in the mood for this. Just listen to FEDUP Collective.
WE ARE SIZE INCLUSIVE AND SO WE ARE NOT DOING ANYTHING HARMFUL TO PEOPLE IN LARGER BODIES
I've noticed that while this may be sort of true in terms of accepting patients who are fat, it is still harder to access treatment in many cases, and you may be treated differently. There may be activities that are indirectly contributing to fat phobia and things being said like 'oh we won't let you get fat' or similar can be really harmful to folks who overhear staff saying that and also reinforces weight stigma. Insurance is also more likely to cut before you're ready. I recognize that this one goes beyond just treatment centers and also hits insurance providers which is kind of a separate issue.
-Be more proactive about limiting harmful conversation among patients.
-Change some group activities to be more inclusive.
-Normalize discussion of binge eating behavior. Even in treatment is taboo to talk about.
-Don't lie. Some people's natural bodies may end up fat in recovery. Figure out how to approach body acceptance with patients in such a way that being fat isn't still reinforced as a bad thing.
WE TREAT PATIENTS WITH TRAUMA......OH WAIT YOUR TRAUMA IS TOO MUCH
Literally have seen this happen to multiple people. If you aren't prepared to treat people with significant trauma, don't advertise as treating folks with trauma.
-literally don't advertise that way
-continue to advertise that way and hire folks who ARE able to treat patients with severe trauma.
Anyway I could keep going on this for hours but I'm getting a headache so I'm going to leave it there. Please feel free to add any suggestions.
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