Kiki’s Story: Get the ANA

When I first began to experience symptoms of what I now know to be an autoimmune disease, my mother, who had been diagnosed with more than one autoimmune disease during my childhood, knew exactly what was wrong. She saw that my symptoms matched hers from when she was my age—the same symptoms that doctor after doctor had ignored when she wanted to know what was wrong with her, and she was sure I was developing the same issues. Because of this, I knew to seek medical help right away in fear of doing permanent damage to my body, especially considering my family medical history.

However, when I went in to see my general practitioner, I was told it was likely just anxiety, as I had a history of anxiety and was just a teenage girl. So I requested a referral to a rheumatologist to confirm that nothing was wrong. I was denied this, and because my symptoms were mostly skin-related, I was referred to an allergist instead. I was then shocked when the allergist I ended up seeing agreed that I was just anxious, and to make matters worse, she believed that my being a queer individual meant that to cure my illness I would need to receive intense psychiatric help. This was heartbreaking to hear.

I knew something was wrong.

I had gone from having the energy of a normal, athletic teenager to feeling like I was constantly walking through molasses. I could barely sleep because of how terrible my itching symptoms had gotten. So I pushed for a blood panel to be run, including an anti-nuclear antibody count. Only then was I finally vindicated and learned that my ANA count was just as high as that of my mother, who had been battling her autoimmune disease for decades. It took me, in the end, nearly 8 months to start medication for a disease I knew I had from the start.

This needs to change.

We must change not only in the way women are treated by healthcare providers but also in the focus of healthcare being on a patriarchal standard. Women are routinely turned away by providers for being overly dramatic, or they are told that all of their medical issues will dissipate if they just lose weight. These excuses for poor care are results of the impact of the patriarchy on healthcare, as they are a reflection of societal stereotypes held about women and arbitrary standards set by what is desirable in a woman, not what is most beneficial for her care.

A shift towards believing women when it comes to their symptoms may also help to shift research towards underfunded and under-researched medical topics such as autoimmune diseases, which disproportionately impact women. We need to create a healthcare system in which equal medical treatment and equal access to care are afforded to women around the world- that is true “women’s health.”

Women’s health means researching diseases that predominantly impact women instead of always focusing on male health and male normative care. It means acknowledging women in healthcare as equal providers capable of speaking out and advocating for women's health. Overall, women's health, to me, emphasizes the holistic care and empowerment of women to lead healthy and fulfilling lives.