Makailah | Overcoming Barriers to Eating Disorder Treatment
What I was up against:
- Black women are 25% less likely to be diagnosed as white women with the exact same eating disorder behaviors.
- Only 17% of Black women, 41% of Latina women, and 44% of white women are accurately diagnosed by doctors when presenting with an eating disorder.
- Black and Hispanic populations are twice as likely to experience food insecurity and homelessness compared to white counterparts.
- BIPOC are significantly less likely than white people to have been asked by a doctor about eating disorder symptoms.
I know it’s tough to hear. I should not be here, though I am. Numbers mean nothing to my story. I see statistics as helpful to progress along with research but nothing more. Not a box or mechanism that defines me or my path which led me to recovery. And I had to push, fight outside of statistics, weight and racial stigma, along with financial/insurance barriers to attain eating disorder treatment and this recovery.
Fighting for eating disorder treatment
I cannot write about my story without mentioning my awesome, resilient grandmother. She became an instant single mom at 40 years old to me. With her, we faced many obstacles including homelessness, food insecurity, and lack of financial resources. These obstacles being the same exact barriers that kept me from being diagnosed for about 6 years.
You see, partway through middle school, I mentioned to my primary care doctor about my eating disorder and how I felt I needed to keep losing weight. My doctor agreed with me about having to lose weight and did not mention anything to my grandmother in the waiting room about what I had disclosed. So I left that conversation there at 14. I mean, he’s a doctor right? At 14, I didn’t understand the system at play. I didn’t understand the racial prejudices that my provider could carry or the weight stigma he could possess that impacts my health. Also I had Medicaid insurance, a form of public assistance from a government that controls whether I am sick enough to need help or not.
Two years later, after years of destruction on my oral health, my dentist, not my doctor, observed the oral decay in my mouth and called out my eating disorder. I was diagnosed with binge eating disorder first, then bulimia nervosa. Yay, I was getting help! Sike.
Medicaid had many issues with approving any eating disorder treatment centers as they were over 2 hours away or out of state from me. I also was a “maxed out” candidate. I had recently been diagnosed that not only am I deaf in my right ear, but I am going deaf in my left ear. I had a cochlear implant by surgery installed to help with my ongoing disability which cost a lot of money for the state. My grandmother and I both knew these factors were in our way, much like a huge blockage in the road.
Never giving up
With all this in mind, my grandma fought. She knew she would have to fight because we unfortunately did not have many privileges awarded to us. She called the Medicaid office every day that ended with a “y” for eating disorder treatment approval. Finally, after months, I was approved for VERY basic Cognitive Behavioral (otherwise known as CBT) therapy that was mixed with family therapy but it was something. And seeing my grandma fight so hard for me, I pushed myself in therapy and with exposures at home. I pushed to recovery and to life.
Sadly, many other folks are experiencing the same financial, insurance, diagnostic, and geographic barriers I did. We cannot ignore it! We also cannot ignore the programs that are giving back and changing lives, which is why I pledge my time and resources to them. ANAD is doing just that. They offer group supports, peer mentorship, approach guides, treatment directory, and so much more.
And did I mention that it is free and accessible online?!
Makailah (Mak) Dowell
Makailah Dowell recovered from bulimia nervosa and binge eating disorder in her late teens. Facing many barriers to treatment, including later diagnosis, being on public assistance, and facing both weight and racial stigmas; Makailah recovered in an untraditional environment. She was supported by her single grandmother and CBT therapy. After, Makailah pursued her degree in bachelors of biology and research, then returned home to Boise, Idaho where she currently resides. Makailah works as a Lead Peer Mentor at Equip where she continues to share her lived experience to help others to their own roads. Also, Makailah is a belly dancer and public advocate for healthcare equity and social justice within the eating disorder field in her spare time.