By: Syreen Goulmamine, MPH, Science Programs Manager at the Society for Women’s Health Research  

Autoimmune diseases occur when the body’s immune system mistakenly attacks its own healthy cells thinking they are germs or foreign bodies. Autoimmune diseases affect more than 24 million Americans, with four out of five patients being women. Type 1 diabetes (T1D) is considered an autoimmune disease and impacts approximately 1.25 million Americans. In T1D patients, the pancreas cannot make insulin, which is responsible for assisting blood sugar into the cells for energy. It is a chronic condition, which cannot be prevented or cured—only managed—and impacts daily life. 

Type 1 Diabetes in Girls and Women 
Sex differences have been observed in T1D patients, with women and girls facing diabetes-related complications and poor outcomes at higher rates as compared to boys and men. For example, research has shown that women with T1D onset prior to puberty have a shorter reproductive life stage compared with non-diabetic women, including earlier natural menopause. In addition, comorbidities such as hyperthyroidism, hypothyroidism, and celiac disease were more common in female T1D patients as compared to male T1D patients. Young girls with T1D are at increased risk of hyperandrogenism and polycystic ovary syndrome (PCOS), and studies have shown that about one in four women with T1D will get PCOS at some point. The disparities between men and women with T1D continue into future complications that include infertility, cardiovascular disease, and end stage renal disease—all creating a significant impact on women’s quality of life. And ultimately, women with T1D have nearly 40% greater excess risk of all-cause mortality when compared to men with T1D.  

My Type 1 Diabetes and PCOS Story
Living with T1D has taught me resilience, but adding a PCOS diagnosis was something I had not been expecting. It hasn’t just been about managing two separate diagnoses—it’s been about understanding how one condition affects the other and, most importantly, learning to advocate for my own needs when the health care system fell short.

When I was first diagnosed with T1D at the age of seven, the challenges felt overwhelming. Learning to manage blood sugar levels, balancing insulin doses with meals, and constantly adjusting to new fluctuations during childhood were huge changes that took me time to finally grasp and understand. Then, it wasn’t until after I had reached puberty and dealt with many years of irregular periods, that I was finally diagnosed with PCOS.  

Initially, I thought my health care team would have insights into balancing both conditions. I expected them to have answers, but reality quickly hit. My endocrinologist at the time focused solely on my diabetes, advising on insulin doses without considering how PCOS was throwing a wrench into the process. My gynecologist, on the other hand, didn’t fully consider how treatments for PCOS could impact my T1D. There was no communication between them—and I was left in the middle, trying to figure out how to make everything work together. 

I remember feeling frustrated, often unheard, and at times, even dismissed. It felt like I was treated as two separate cases instead of a whole person with unique needs. That’s when I realized if I wanted a care plan that truly addressed both conditions, I’d have to step up and be my own advocate. I started researching both conditions and trying to understand how they interfaced. For example, I learned that my insulin therapy may play a role in my PCOS diagnosis. I found myself coming to my health care providers with prepared questions, asking them about new approaches, and even suggesting potential adjustments when it felt like they hadn’t fully considered my situation. Through trial and error, I found a way to manage both conditions that works for me.  

This journey hasn’t been easy, but I’ve grown in so many ways. I learned how important it is to find providers who listen to you, conduct your own research, ask questions, and take time to understand the complexities of each condition. Finally, finding providers who communicated with one another took some time, but it was worth it. Now, I have a team that sees the whole picture, and they work with me instead of around me. 

Advocating for myself and learning about my body has given me confidence. I’ve come to realize that self-advocacy isn’t just about speaking up—it’s about taking control of my journey, educating myself, and pushing for the care I deserve. For anyone managing multiple diagnoses: don’t be afraid to ask for what you need, question your care plans, and remember that you know your body best. 

The Wider Women’s Health Perspective 
As a woman living with T1D, my autoimmune journey has been deeply intertwined with many other aspects of my health and well-being, shaping not just my daily routine, but also my understanding of women’s health advocacy and literacy. Women living with autoimmune conditions must have access to the education and resources to manage their condition’s chronic impacts across the lifespan, as each new chapter of life may bring new challenges to light.

The Society for Women’s Health Research (SWHR) has worked diligently in the autoimmune space to provide education and resources, including a recent publication in the International Journal of Environmental Research and Public Health entitled “Autoimmune Health Crisis: An Inclusive Approach to Addressing Disparities in Women in the United States,” which I had the honor of co-authoring, and includes T1D as one of the featured autoimmune diseases discussed in the review. SWHR has also published an autoimmune policy agenda to address gaps in autoimmune disease care and access, several autoimmune fact sheets for patients and clinicians alike, and patient toolkits to help women navigate living with autoimmune diseases, such as lupus and psoriatic arthritis.

SWHR is committed to advancing women’s health through science, policy, and education across autoimmune diseases as well as a variety of conditions and diseases that disproportionately impact women. By identifying knowledge and policy gaps in women’s health, as well as exploring and sharing individual patient experiences, we aim to better inform researchers, providers, and policymakers on essential areas in women’s health. Pairing data and storytelling can equip stakeholders to partake in evidence-based decision-making for women’s health.

We, at SWHR, encourage you to share your Women’s Health Perspective with us! Stories shared with SWHR may inform our resources and be shared on our website and social media platforms.

The Society for Women’s Health Research is a member of the National Health Council (NHC). For more information about NHC membership, click here.