Neurodiversity, Eating Disorders, and the LGBTQ+ Community

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Intro:

Quinn Haisley (they/she), is a non-binary, queer, and neurodivergent eating disorder dietitian. Quinn started working in the eating disorder field 3 years ago as a registered dietitian in BALANCE eating disorder treatment center, where she has worked at the PHP, IOP, and outpatient level. They started their own private practice, Practice Eros Nutrition, in April 2022 to primarily focus on working with LGBTQ+ and neurodivergent folx after seeing a need for more affirming treatment spaces run by clinicians with lived experience. Quinn is passionate about breaking out of the cookie cutter ED treatment model and bringing social justice into ED recovery.

In today’s episode, Quinn and I discuss the overlap between neurodiversity, eating disorders, and the LGBTQ+ community. I learned so much from this conversation, so I have no doubt you will too!

Liv: Hi, Quinn! How are you doing today?

Quinn: I'm good! How are you?

Liv: Good! I'm already getting SO MUCH energy from talking to you because this is such an important topic! What is Practice Eros Nutrition and what inspired you to do the work you do today?

What is Practice Eros Nutrition? What inspired your work?

Quinn: Practice Eros Nutrition is the private practice I started a year ago and focuses primarily on working with LGBTQ+ identified and neurodivergent clients. I am LGBTQ+ identified and neurodivergent and saw a need for more affirming-tailored treatment for those communities within the eating disorder treatment space. There's some out there, but there's a shocking lack of it considering how many queer or neurodivergent people have an eating disorder and are in recovery. So I wanted to be able to give more to those communities and create a safe space for them.

Liv: That is so beautiful. I love that you created this from your own lived experience. I believe that lived experience is the best qualification when it comes to helping people. How else can you ever understand someone dealing with these parts of their life if you don't have that experience? For me, I started focusing on bridging the gap between eating disorders and neurodiversity, specifically, and discovering how my approach to not only recovery but life is so, so different and having this unique lens to look through. A community of people that understand that and can spread that message to other people, is so, so empowering, and it makes you grateful for being unique and different. In the past, I always wanted to fit in and be everyone else, but now, hell no, I just want to be me!

Quinn: It's great to see so many community spaces where we have more people with lived experience doing this kind of work. In the past few years, I've seen a lot more and it's so helpful in these spaces.

Liv: It's kind of like when we hear how autism has become more "prevalent" over the years. It's NOT that it's become more prevalent, it's that people recognize it and are more aware. I feel it's the same with being LGBTQ+ or any type of eating disorder; it's not that there are more people suddenly LGBTQ+, it's that there's more acceptance around it. Although, we were just talking about there being a lot of non-acceptance, unfortunately. But let's focus on the positive, right? One of my favorite quotes by Martin Luther King is, "Hate cannot drive out hate, only love can do that," and I apply that everywhere. If we're going to focus our energy on the horrible people that are saying it's all fake news, we're not going to get anywhere. It's important to empower the people that are advocating for inclusivity and love and acceptance.

Quinn: Exactly!

Liv: So, that said, how can being queer and neurodivergent interplay during an eating disorder?

How can being queer and neurodivergent interplay during an eating disorder?

Quinn: This is probably something we're going to get more research on in the next few years but there’s a lot of interesting research around how being neurodivergent makes people think outside of the box and outside of social norms, which makes people feel more comfortable with exploring things like queer identities. So you see a lot of overlap. Many of my clients are both queer and neurodivergent, and it's very interesting to explore how both are impacting their eating disorder and recovery. You've already brought up that it’s really important that people in recovery feel there are spaces where they have people whom they identify with. I’ve seen people who've gone to higher levels of care or done different treatment programs, and while those can be extremely helpful and extremely supportive, they're not usually tailored for neurodivergent or queer people. There can be a lot of gaps in care on clinicians’ part where they don't understand how being queer or neurodivergent is impacting somebody's eating disorder. So that's why I think it's really helpful to find clinicians who have lived experience or find peer-support groups. Those make them realize they're not alone in the experiences they're having and that a lot of other people identify with those experiences, too.

Liv: You brought up a good point about higher levels of care and treatment centers not being tailored. Even though I don't have lived experience with the LGBTQ+ community or identity, I do have experience with neurodiversity. Having been forced in and out of treatment for almost a decade, I learned to mask my neurodiversity and became conditioned to tell the treatment providers what I knew they wanted to hear because a lot of my truth was invalidated. I have a client that struggles with body dysmorphia, and they said that a lot of it was caused by feeling they were in the wrong body, and I can imagine this person being told, "Oh, that's JUST your eating disorder." That can contribute to disordered eating because you want to change your body and you can do that through eating and exercise. That's just one of those ways in which invalidation occurs when you're working with someone who has no idea what you're talking about.

Quinn: Yeah, exactly. I've seen that with a number of my clients, I've seen that in eating disorder treatment spaces. You're talking about being neurodivergent and somebody saying, "Oh, that's just the eating disorder." There are definitely certain eating behaviors tied to somebody being neurodivergent that are not tied to the eating disorder - those are two separate things. So a lot of the work that I do with my clients is piecing out what might be related to the eating disorder, what feels like disordered behavior, versus what's tied to being neurodivergent. Giving themselves permission to use reasonable accommodations because they're neurodivergent. With queer clients, especially gender-nonconforming and trans clients, there can be a, "It's just the eating disorder and body dysmorphia, that'll go away once you're in recovery," versus, if they're experiencing strong gender dysphoria, treatment care like gender-affirming surgery or HRT can be super helpful for them. If that's not being recognized by their treatment team or by a higher level of care, then they can get stuck in recovery because nobody's recognizing that that's what's happening.

Liv: Exactly. And you just named “gender dysphoria.” I have to be honest, this is still a new term to me, so I'm super curious: How can gender dysphoria impact the development of disordered eating and eating disorders?

How can gender dysphoria impact the development of eating disorders?

Quinn: This is something I see a lot with my trans and gender-nonconforming clients. It's really important to have the difference recognized between body dysmorphia and gender dysphoria, because while there can be a lot of overlap between the two - feeling severe distress being in your body - all of that can be very similar. But with body dysmorphia, usually, we're thinking in ED recovery that the process of renourishing ourselves, doing body image work, all of that can make a significant impact on improving body dysmorphia; versus gender dysphoria being solely related to feeling the body you are in does not align with your gender identity. You can do all the body image work you want and renourish yourself as much as you want to, but that won't get rid of gender dysphoria. The big distinction to make is that they're not going to be treated the same way.

Liv: Distinguishing neurodivergent traits from the eating disorder traits is a lot of what I talk about with my clients and also in my upcoming book. This idea of how, for years, treatment providers tried to cure my eating disorder by trying to get rid of my autistic traits. That reminds me of what you're saying here. They're trying to cure body dysmorphia by trying to get rid of gender dysphoria. That ultimately creates more invalidation, more insecurity, more anxiety, and more distrust. These are all the factors that led to the eating disorder in the first place! So that's why the work you're doing is so, so important. And again, with that lived experience, being able to explore with your clients what's coming from where so that you know what you want to work on. But also, what do we want to embrace? Because I stayed stuck in my eating disorder for much longer because they wanted me to get rid of sensory food preferences and the need for routine around food. The more you try to attack something that's intrinsically part of you, the more invalidation and distrust, and when you don't have trust in your body and treatment providers, or even in life, you're going to cling to something that gives you a false sense of control, Which is the eating disorder. So thank you so much for sharing that. What are some incorrect assumptions that are often made about queer people with eating disorders?

What are some incorrect assumptions made about queer individuals with eating disorders?

Quinn: Honestly, one of the misconceptions is that anybody who is trans, non-binary, or gender-nonconforming, and has developed an eating disorder, has gender dysphoria. That's not necessarily true. Things like gender-affirming surgery or hormone therapy are NOT something that every single person will actively seek out or want. That's definitely a big one, the assumption that everybody's experience with an eating disorder is going to be the same if they're in the LGBTQ+ community. It's going to be very individualized and very different. There can be overlap but let's not just stick people into the box of, "Everybody is the same if they're part of this community." Another common misconception is thinking sexual orientation doesn't have as much of an impact on eating disorders as gender identity. I see a lot of information and research that looks into how gender identity and transness can impact the development of an eating disorder, or how an eating disorder is perpetuated, but I see a lot less on how sexual orientation affects somebody's eating disorder or the development of one. A lot of my clients who might be queer, gay, bisexual, or whatever they identify as, but are cis, are not always recognized in treatment. The provider says, "Whatever, you're cis, you obviously feel comfortable in your body, you're fine." So they don't think about how their sexual identity might also be impacting their eating disorder or development, and so that gets shoved to the side a little bit.

Liv: You brought up something really important and it’s the whole philosophy behind living label free: The problem of people placing others in boxes. "You are this, so you can't be this." Restriction and invalidation are rooted in labels, whether we're labeling food as good or bad, but also whether we're labeling a person and their traits as, “This one is significant or important, and this one isn't.” I feel the problem with traditional treatment and those who try and help with eating disorders that have no lived experience, they try to copy/paste their textbook onto a person. When that doesn't work it's, "You're too complex," because they can't find you in their textbook. Everyone is different. I don't think anyone matches the textbook definition of an eating disorder.

Quinn: It's one of my major complaints with the DSM. It's such a strict thing to keep everybody in to qualify for an eating disorder. It negates people's experiences when they don't fit into this little box of what an eating disorder is SUPPOSED to be. "Should I not get support, then? Do I not deserve recovery because I don't fit into this classic view of what an eating disorder looks like?"

Liv: And just perpetuates the belief of "not sick enough." One of my clients once said, "Yeah, but this isn't right, I don't match this..." And I'm like, "Who do you think wrote this textbook?" NOT someone with lived experience!  The problem is already in the origins of the diagnosis. I was having an interview last week with ARFID dietitian Lauren Sharifi and she was even saying how the ARFID diagnosis is only 10 years old but that doesn't mean it wasn't around before! With this misconception that sexual orientation doesn't have as much of an impact on eating disorders, could you elaborate or give an example of invalidated sexual orientation and how this negatively impacts their experience in eating disorder recovery?

What are some examples of invalidated sexual orientation negatively impacting the recovery process?

Quinn: Great question. I have a few examples popping up in my head of conversations I've had with clients about this, a few where we're talking about the origins of their eating disorder and when they remember eating disorder behaviors popping up. Some of it happened when they first recognized that they weren't straight and finally saw that something might be going on with their sexual orientation. That can freak you out and can feel really scary. They also might not exist in environments where it feels safe to come out, and so a protective mechanism that can come through is the eating disorder. It developed because they didn't feel safe in their own identity or being open about their own identity, so that was the protective mechanism they made for themselves. The other thing that comes up for a lot of my clients, if they're cis but gay or bisexual or lesbian, is that they go to health care providers and a lot of health care providers assume straightness. And so if they come in and they're cis but the doctor's assuming that they're straight, then they can say, "Tell me about your husband," and the person's having to go, "Hey, I'm a lesbian! I have a wife, thank you!" It's this kind of assumption that a lot of providers have of just assuming everybody is cis and straight until told otherwise. Instead of going into it with, "I don't know about your identity and so I'm going to use either very non-gendered language or I'm going to ask you questions about it to discover what your identities are." That is something a lot of my clients encounter, for sure.

Liv: That's so interesting! Obviously, for me, being in a cis, straight, white body and having fit the stereotype of an eating disorder when I was sick, hearing this from you and also hearing the experiences of my clients who don’t fit the mold of what an eating disorder is “supposed” to look like, it’s opened my eyes to realize what privilege I had. The world is so unfair with having these assumptions made that you don’t identify with when going to the doctor. How invalidating and unsafe that feels. When discovering you’re lesbian, gay, queer, or just exploring your identity, you're going to develop something like an eating disorder if you feel the world won’t accept you for who you are and like everything is out of your control. The only thing that IS in every single person's control is what they eat and how they move. That's why I don't think it's strange that so many people develop eating disorders. If you think about the fatphobic and stigmatizing society we live in, of course, the prevalence of eating disorders is going up. Are there any other misconceptions you wanted to share that are often made about queer people with eating disorders?

Quinn: Nothing glaring that's sticking out to me but if I think of something I'll come back to you!

Liv: That's okay! If anyone is reading this and going, "Oh my gosh, you totally didn't name this misconception!" Please either reach out to me or Quinn on Instagram. I'm @LivLabelFree.

Quinn: I am @Practice_Eros_Nutrition.

Liv: So if anyone wants to share their glaring assumption or misconception, we'd love to hear them. People with lived experience are who I've learned the most from and I'm sure it's the same for you. Even in working with people, when explaining something that's been in the back of my mind for a long time, it’s through talking with them that I’m able to finally vocalize it. And then I'll make it into a piece of content or put it somewhere else and say, “Thank you, client!” And they'll go, "I didn't do anything..."

Quinn: Oh, you did, though!

Liv: You EXISTED! So yeah, the misconceptions go to show how much work needs to be done in the world and the awareness that is necessary. Even though we've seen a lot of negativity around this, focusing on the positive, and amplifying the voices of people with lived experiences is the most important thing we can do. How can eating disorder treatment be tailored and be more validating for queer individuals?

How can eating disorder treatment be better tailored for validating queer individuals?

Quinn: One of the main things is making sure that all the staff is trained in working with queer individuals. That is a very basic level of what treatment centers can do and there are amazing people and organizations out there who do training. FEDUP Collective is one of my favorites, they work primarily with trans and intersex clients to get them treatment and care and do training with facilities. They go over terminology that different clinicians should know, the difference between body dysmorphia and gender dysphoria. The main thing for creating safe spaces in treatment centers is just the basic education that clinicians can do around the topic so patients or clients don't have to put in a ton of labor to educate their treatment team. Because it's a lot of emotional and mental labor to educate your team about what your experience feels like. There's a difference between being curious about somebody's experience, wanting to get some more details from them, versus having zero understanding of the words they're using or the experience they've had. So you're spending a ton of time educating your treatment team instead of actually getting support from them. That is the big thing, at minimum making sure all of the staff have received formal training in how to work with queer individuals.

Liv: Yeah, not having the patient or client themselves put all the work in to educate. I remember going to the doctor just last year and they were talking about BMI and I'm like, "You DO know that BMI is the bullshittiest thing ever, right?" And they only said, "This is the system we use." I was rattling off a whole story about how BMI was invented and they just blankly stared at me and said, "Wow, I didn't know that."

Quinn: You should! You're a medical provider!

Liv: Right! And I'm just sitting here thinking, "I'm paying you to basically not know anything." Doesn't make any sense! But yeah, looking at FEDUP Collective, they're doing great work.

Quinn: Amazing work! They also have a dietitian match program that I'm a part of, where they help match dietitians with people who are going through FEDUP to get treatment or extra care. They provide very low-cost services, which is amazing to have. Affordable or accessible treatment can also be an issue.

Liv: I can't even imagine how much harder it would be for gender surgeries. A lot of the time that's not covered because, "Oh, that's YOUR problem." Like, what the actual frick!?

Quinn: Definitely. Another huge issue with some of our trans individuals who are trying to get surgeries is BMI cutoffs. Providers will not give them things like top surgery because their BMI is “too high,” so they're denied what I consider to be life-saving treatment. Huge issues we're still working through.

Liv: That's another illustration of how messed up the healthcare system is. I read this quote that I thought was a great way to metaphorically represent BMI: "If a neurosurgeon is performing 200-year-old techniques he would be immediately banned." And well, BMI is over 200 years old! So why is every healthcare professional still using that in a world where technology has never been MORE advanced? And of course, just acknowledging that some people naturally need to be in a larger body to function at their best. Why can people just not accept that?

Quinn: It's so frustrating.

Liv: So frustrating but brings me back to being so thankful for you and everyone else who wants to become more aware and wants to better themselves. There is no shame in a lack of knowledge, as long as you are open to learning, listening, and trying to understand other perspectives. It's that closed mindset of, "This is how we do it, this is the only way, THIS is my belief - everyone else is fake news!" It's that mindset that creates awfulness in the world. So thank you, Quinn. Anything else you wanted to add or share? Any words of wisdom?

What are your words of wisdom for queer-identifying or neurodivergent individuals currently recovering?

Quinn: If you are queer or neurodivergent and are in recovery from an eating disorder, know that you're definitely not alone. There are so many people who have similar lived experiences. Find those safe spaces where there are others who validate your experiences, who can identify with your experiences, and there are some amazing free resources out there. I've seen the amazing impact that finding a community can have on people. The more we have, the better off people will be.

Liv: I love that. The whole reason why I have Liv Label Free is to create that openness and awareness. It's so, so, so, so important! And I could add a thousand more so's to that! For those wanting to learn more about you, get in touch, or be part of your community, what would be the best way to do so?

How and where can people get in touch or join these beautiful communities?

Quinn: Either my Instagram @Practice_Eros_Nutrition or my website www.practiceerosnutrition.com. I also have a couple of groups, an LGBTQ+ eating disorder support group along with a neurodivergent and eating support group. So if anybody's interested in either of those, you can check that out on my website!

Liv: Thank you so much for sharing everything, Quinn. I learned so much, and have no doubt my audience did, too.

Quinn: Thank you for having me!