Working Toward a Medication-Free Life With Type 2 Diabetes

Kimberleigh Joy Smith shares her story

This article is part of Health Divide: Type 2 Diabetes in People of Color, a destination in our Health Divide series.

Kimberleigh Joy Smith, MPA

Photo Courtesy of Kimberleigh Smith / Designed by Zoe Hansen

Meet the Author

Kimberleigh Joy Smith, MPA, who lives with type 2 diabetes, is the Senior Director of Public Policy and Advocacy at Callen-Lorde Community Health Center. Kimberleigh has dedicated her diverse, 25-year-career to improving health and promoting health equity and social justice for BIPOC, Queer, LGBT, and low-income communities. 

I knew something was off when I went to my healthcare provider for a routine annual physical in December 2016, but I wasn’t expecting to be diagnosed with type 2 diabetes. 

My blood sugar was 338 milligrams per deciliter (mg/dL), and my A1C was upwards of 11. I weighed the most I ever had in my life. I didn’t feel well, in general. I was tired. I would frequently, randomly, and abruptly break into an uncomfortable sweat, often at the most inopportune time. I chalked it up to stress and perimenopause. The most frustrating symptom was an intense itching on the inside of my legs, down to my feet, that occurred after eating.

I mentioned this to my healthcare provider at the physical. We agreed that I would track my diet to determine if I had developed an allergy. We discussed the symptoms of perimenopause. It was hard to tell what was going on.

I was taken aback when she called me that evening to inform me that I had diabetes. 

Kimberleigh Joy Smith

Part of me was disappointed in myself that I could let this happen to me.

— Kimberleigh Joy Smith

Knowing the Risk Factors

I am an African American woman, and both my parents were diagnosed with type 2 diabetes in their adult lives. My mom was diagnosed in her 40s and is still living with diabetes in her mid-70s. My father was diagnosed later and lived until he was 79. I have worked as a health policy advocate for years—focusing mainly on HIV and LGBTQ health, and I am aware of the statistics and prevalence of diabetes in the Black community, and still, I was surprised. 

I consider myself a healthy eater who exercises. I’ve trained for sprint marathons and races. I even ran the New York City Marathon in 2013. 

Part of me was disappointed in myself that I could let this happen to me. I should have known better. By the time I was diagnosed, my running and regular exercise routine had slowed. I had gained a significant amount of weight. I had a partner, a school-aged kid, a busy job, and a commute. Days, weeks, and years felt like a blur of busyness. Even knowing that diabetes is a chronic disease that one can manage and live with didn’t make me feel better. It was hard to escape the feeling of having screwed up.

Learning to Live With Diabetes

I had to take time off from work to return to the healthcare provider’s office to get an initial insulin prescription, testing supplies, and a tutorial from a nurse on how to check my blood sugar. It was super helpful but also very depressing. I knew that testing, poking, injections, and taking pills twice a day were not things I wanted to do for the rest of my life. Those initial days and the words chronic disease played over and over in my mind.

A few weeks later, I had an appointment with an endocrinologist at Northwell Health. By that time, I realized that insulin wasn’t working for me. The itching persisted, and I felt out of control. The specialist discussed options with me, and she gave me hope that I could work towards not having to take medication. 

I don’t recall an “aha” moment, but after a few weeks of feeling sorry for myself, I started to take the medications as instructed. I began to pay a little more attention to what and how much I ate. I also met with a nutritionist at Northwell. The medication I took curbed my appetite and cravings, which helped me with portion control. It turns out that portions were a big part of my problem, and reducing the amount of food I ate was the biggest factor in my weight loss. 

Kimberleigh Joy Smith

I’ve heard and read that this is possible to not be on medication forever. That, to me, is the goal.

— Kimberleigh Joy Smith

As the weight started to come off, I felt better. I made a routine out of taking the medications. The painful and annoying itching subsided. At every follow-up visit, my A1C was dropping. Though I am not training for any marathons anytime soon, I still run. And I’m happy to report that I have lost nearly 70 pounds in the last five years, and at my last appointment, my A1C was 5.8.

It’s been nearly six years, and I’m still reliant on medication. At my last visit, I took that first concrete step in getting off medication: I told my healthcare provider to decrease my treatment dosage for my next refill. I would like to eventually wean myself off the medications and get to a place of remission. I’ve heard and read that this is possible to not be on medication forever. That, to me, is the goal.

Paying for Care

I realize that not everyone is fortunate to have great health insurance like I do (shout-out to Callen-Lorde). The cost of insulin and diabetes supplies can add up.

I have been able to work with my healthcare provider and adjust my treatment regimen so that it works for me, and by and large, these expenses have been covered. I don’t take this for granted. Since being diagnosed with diabetes, I’ve learned about amazing patient-led advocacy campaigns like #insulin4all, which unites the diabetes community to fight for access to diabetes supplies, care, and treatment for everyone—having access to such excellent health care since my diagnosis has only deepened my commitment to health justice and equity in my work.