'I Did Not See Myself in the DSM-V:' What We Lose When Our Systems Lack Cultural Context

For the last year and half, I have been working on undoing decades of mistreatment around my weight and messaging that I have received about my body. I started seeing an eating disorder therapist (a white woman, I am Black). When I went to her, she was just what I needed, so I thought, but it soon became apparent that she did not have all the tools necessary to help me.

After about a year and a half of therapy, we were reviewing my diagnoses (I see her for other illnesses too) and she stated that for insurance purposes, we should get an eating disorder listed as a formal diagnosis. We had been up until then calling it disordered eating.

She took out the Diagnostic Statistical Manual, Fifth Edition (DSM-V) — which is the main guide used by health professionals in diagnosing mental illnesses and disorders — and began reading all the criteria for an eating disorder diagnosis. I listened intently. We landed on binge eating. She asked me some questions; I could not really see where I fit but I knew I needed to pick something. After years of dieting and starving myself, it was hard to articulate what my eating patterns really are anymore.

I was triggered by this process of selecting a diagnosis because here I was sick, and I really did not know what it was. I did not see myself in the DSM-V.

Soon after this work with my therapist, I attended a support group for Black folx with eating disorders on Zoom. I was talking with the group about how I was triggered with the process of having to choose an eating disorder from the limited scope of the DSM-V. Then out of nowhere I said, “I think the DSM is racist.” The chat lit up with affirming feedback. People were nodding and posting reactions. I felt heard.

Then, I had to sit with that statement and really think it through: What was I talking about? What did it matter? Why did it matter?

The DSM-V lacked cultural context. I was beginning to be concerned that it did not account for slavery and how that has led to certain eating rituals and patterns. Maybe it did not consider Black body image issues as a measure that influences feeding patterns. Did it allow for some behaviors being “normal” in the context of race and culture? Was everyone left out other than white people? What if the relationship I have with food and my body is not an eating disorder at all as defined in the DSM-V?

As a Black woman, I am often coming up against systems and treatment that are white-centric. I am always having to weave and bob to adapt. I always must dig through the weeds to see what pertains to me and what does not. Many times, nothing pertains to me, but I still must use the scale that is provided because society (insurance) requires it of me.

I realized that day at the meeting that the DSM-V possibly has a foundation in evaluating white men and looking at what is “normal” for them, and then determining mental health abnormality.

I am beginning to think this book was not developed with me in mind or with my people’s input or evaluation. Some will say, “does it really matter?” I would say you obviously have not studied racism in medicine in the USA, and the medical field in general.

What are the implications if the DSM is racist?

Black women can once again not get their needs met. Again, we are told you must fit to get served. You must fit to be treated. You must fit to get diagnosed.

What would it be like if more Black folks were studied to write the DSM and determine categories? What if there was a Black DSM-V? What if it was written by Black women? What would it be like if more Black women were in practice serving Black women? What if the schools were training all therapists to serve Black women in a way that meets their needs and recognizes the implications of Black culture? What if we could see ourselves in the DSM?

What is there to be so defensive about?

I circled back to my eating disorder therapist and let her know my thoughts about the DSM-V — that I was rejecting the diagnosis she had assigned to me. I then went on to explain what I thought, as I did here. She went on to defend the DSM-V. She acknowledges that there may be some flaws but continued to try and get me to see that cultural bias was not inherent in the DSM-V. She argued as she read the categories that “this refers to everybody, it is taking culture into consideration,” or “it does not matter to give this diagnosis.”

I was becoming more and more frustrated. I felt out of my league to argue with her, but I was determined to make my point. This thinking was all new to me (I have had clinical diagnoses since college) but I knew I needed to stick to my will and get her to understand. I finally said that possibly, if the writers, reviews, and researchers for the DSM-V had studied Black women more, there would be more categories, more flexibility in the diagnoses. I would feel seen and heard. I would feel that my experience mattered and that I was cared for.

She backed down. I think we had a breakthrough. I hope she has a better understanding now and will do her own research and be a better therapist.

Can I just say: I am so tired of all the emotional labor that goes into educating “woke” white women. It can be a bit much.

Problems

• Black people have limited power in medical circles
• There are not enough black therapists (and I am sure not enough BIPOC therapist also).
• The Black therapists we do have must learn how to serve Black clients despite their whitewashed training.
• The DSM-V is the gold standard (and the only diagnostic criteria used by insurance companies).
• There tends to be inadequate funding to research Black people.
• There appears to be a lack of political will to make any changes. Is it even possible under the current systems?

What can we do about this?

I am not sure. I do not know a way forward that is empowering and will not require more emotional labor on our parts. There is no defined takeaway here. I just want you to know you are not alone. That you are not delusional; this is really happening to you. You really are being gaslit. You may very well be being given a diagnosis that does not represent you and was not created with you in mind.

I am sure if I looked more closely at my other diagnoses, I would see similar patterns. But not today. I am too tired to expend any more energy on recognizing the flaws in the system and then fighting them alone.

I commit to self-care — to focusing on what heals me from my oppression and what makes me feel seen and heard.

You are Mighty and you deserve rest and justice.