People of color are less likely to get the care they need or deserve in the current eating disorder treatment paradigm. Research shows that eating disorders are likely equally prevalent across races, yet they are chronically under-diagnosed and under-treated in people of color.
Racial bias is a serious issue that must be addressed to improve care to all communities, especially those that are not white and meet the criteria for low-weight anorexia diagnosis. Eating disorder professionals, including therapists and dietitians are almost all white and lack training on how race intersects with eating disorders.
Following is an interview I conducted with a person of color to find out her experience as someone who needs support for an eating disorder. Her experience is not unique or unusual, and I appreciated her vulnerability in sharing it with me. She chose to remain anonymous for this interview.
1. How do you describe yourself and your eating disorder?
I’m a woman, lesbian, and mixed African American/White. My eating disorder is both my best friend and my worst enemy. It’s as if it knows everything about me, but targets the weakest areas about myself and is ruthless in its pursuit to get me to be perfect.
I will only eat certain foods, at a specific time, in a specific order, and not above a certain amount of calories. If I don’t do this my anxiety becomes too unmanageable, and if someone or something throws off my routine I become irritable and will refuse to eat.
2. How did your eating disorder first present, and what is its current status in your life?
I was in college when I first began to have issues. I was no longer active in sports and I didn’t like my no-longer-in-shape body so I began to cut out foods I felt I was able to eat as an athlete.
It didn’t work to my satisfaction so I began to restrict more.
After college, I was able ‘to manage’ my eating. I gained weight, got married, had a great job, and things seemed to be OK. It was easy to act like I didn’t care about my weight gain (I very much did).
A few years ago I was prescribed Adderall for ADHD. For me, my ADHD contributes to my perfectionism and increased anxiety. This perfectionism encourages my eating disorder and vise versa.
With ADHD, fixing a meal took a lot of ‘mind energy’ so I would grab and go, forget to eat, or just drink coffee because food is too complicated.
When I was prescribed Adderall these things lessened. It was like my brain sighed in relief, my anxiety was less, and I didn’t obsess as much about having to do things in a specific order, I would remember to eat.
I did okay on Adderall for a while, but due to the appetite suppression aspect, I lost weight. People complimented my weight loss, which ‘woke up’ the disordered eating part of my mind. The negative, persistent thoughts about my imperfections began.
I began to see a therapist two years ago for anxiety. I’ve since tapered off the Adderall at her suggestion. I work hard to follow her suggestions, but we butt heads when it comes to my eating disorder.
A large part of my energy is spent ‘managing’ my eating, I’ll be more honest, lack of eating. I’ve become sneaky about my eating again.
3. How have you attempted to get help for your eating disorder?
When I first started having stomach issues, I had an upper endoscopy done. The doctor asked me what I thought the reason for my weight loss was, and I told him, point-blank, I don’t eat, I had an eating disorder in college.
The doctor replied from what he had seen of my medical records, “You needed to lose the weight. I’m not worried about an eating disorder you had in college, and I won’t put it in your medical records.”
I’ve not mentioned it again.
I went to a doctor who I gave my therapist consent to speak to. I agreed to taper from the Adderall to help with my appetite. This doctor told me I need more variety in my exercise when I pulled a muscle. I play tennis five days a week, ride my bike, and walk the other two.
The same doctor told me I needed to tone my muscles and focus on lifting weights.
She said she was concerned about my weight, but on the BMI I was fine so, therefore “healthy.”
I made an appointment with a nutritionist over a year ago through this doctor’s office, and my first meeting left me confused. The nutritionist gave me a paper with a list of fruits and vegetables to give me more variety in my food choices. The advice was to try new foods. I ended up throwing the paper away and not going back because that felt like impossible advice to follow.
4. What was your experience with getting help as a person of color?
It’s frustrating. I feel like I’ve been dismissed. People say things like “People of color don’t get eating disorders, your family wouldn’t allow it.”
When asked what I eat I was once encouraged to eat more fried chicken. I don’t like fried chicken, never have.
I’ve been told black people have more muscle mass, so I carry my weight well. (I don’t even know what that means)
I don’t understand the reason the BMI is used for people of color. If a doctor is going to tell me clearly I’m thin, and look underweight, but the BMI says I’m healthy, then why tell me I look underweight?
I’ve been told my blood pressure is low for someone who isn’t white.
I’ve been told my protein is low, and you’re losing muscle mass. ‘Eat more eggs.’ The same doctor told me I need more variety in my exercise.
When I went to the doctor for my pulled muscle she told me, “It must really hurt because black people have a high pain tolerance.” I stopped talking about when I was in pain from over-exercising.
5. What would you like to say to professionals whose racial bias has hurt you?
I would like for them to know this: There is enough shame, and secrecy around eating disorders, please don’t add to it because you think the color of my skin makes me immune to a mental health condition.
We may only have the courage and strength to voice our concerns once because the fear can be overwhelming and if we aren’t heard our eating disorder will likely silence us.
If you saw the same symptoms in a white person how would you respond? Respond the same way please, with the same compassion, urgency, and tenacity.
Challenging an eating disorder alone feels impossible. Even if you don’t believe a person of color can have an eating disorder, fall back on your training, and act like they do.
Refer us to someone who has the knowledge, error on the side of caution not the side of race.
Even if our bodies tell you the truth about your illness don’t ignore it because of some stereotype, because we will die without your help.
6. Do you have any examples of professionals treating you appropriately?
Yes. My therapist seems to understand how to approach me. She listens patiently. There isn’t a feeling of being challenged, condemned, criticized, or shamed. She didn’t dive into my ED, but once she’d gained my trust she asked me to see my doctor and get blood work completed, and my heart checked. She said it is for her peace of mind.
I feel like she understands how my ED affects me. She asked me to see a nutritionist and I finally agreed.
Because I value our therapeutic relationship, I want to keep my word, I want to fight my ED and prove it wrong, while it wants to prove me (and her) wrong, I tell my therapist, “I’ll go to a nutritionist again but I’m only going to go four times.”
She says, “Thank you. I knew you could do it.”
Because of her, I did get an appointment with a new nutritionist, and it went really well. I was extremely relieved. She asked about my weight and I told her I wasn’t there for my weight. I know the scale is coming, but she rolled with it at the time.
She asked a lot of relevant questions, likes and dislikes, foods I won’t eat, and history. Not at all like my first experience with a nutritionist, which felt dismissive and terrible.
She did well reassuring me, “We’ll take this really slow.” When my anxiety about a topic showed, she challenged but didn’t press.
I plan on going back to see her. I felt heard, not threatened, or shamed. Ultimately a glimmer of hope in the gentle approach she had. She didn’t try to take anything away from me or minimize my experience. She didn’t try and tell me what not to do but encouraged me to do small things.
Thank you to my anonymous contributor who provided us with this insight. I appreciate you! xoxo
Ginny Jones is on a mission to empower parents to raise kids who are free from eating disorders. She’s the founder of More-Love.org and a Parent Coach who helps parents navigate eating disorder recovery.