Mind and Body Self-Advocacy: A Story of Intergenerational Medical Neglect

During my first week of college, my stomach began to hurt. It was more than a stomachache. I couldn't sleep. I couldn't eat. I couldn't focus in class or sit through welcome week experiences with other first-year students. All I could do was curl up with a heating pad.

The college's health center took my concerns lightly. It took me 48 hours to make an appointment. They thought it could be menstrual cramps. A stomach bug. Constipation. Each day they told me it would go away soon and sent me back to my dorm with a baggie full of tums and condoms, which they give us for any and every ailment.

Almost a whole week and a drawer full of condoms later, the health center workers became exasperated with me. They started to think this problem could be bigger. An ovarian cyst rupture. Appendicitis. After a series of uncomfortable and invasive tests, they sent me to the hospital. V The doctors failed to come to a better conclusion. After four hours of additional testing, there was nothing more they could do for me. They couldn’t treat pain that was invisible to them.

I felt horrible. I felt like the girl who cried wolf. After being told that my pain was unimportant, if not nonexistent, over and over again, I started to believe it. Was I just making this up? Was I an attention-seeker? Was this all in my head? Was I crazy?

But the pain was still there. I just stopped acknowledging it. I learned how to sleep through it. How to eat plain foods in case I threw up. How to laugh and smile and flirt while my insides were on fire. Sometimes there would be a moment of relief, a couple of minutes or hours. I took these moments as proof of my insanity. If I could be fine momentarily, I was fine entirely.

After three weeks of living like this, I returned home. It was wonderful to see my parents and little brother again. I only had the weekend with them, but I sincerely appreciated their love and company. I enjoyed my time at home, but there were a few documents I needed to bring to campus. While rummaging through the filing cabinets in search of these documents, I found something far more interesting.

When I was ten years old, my mother was diagnosed with cervical cancer. By the time they caught it, the cancer was advanced. Her only option was a complete hysterectomy. The surgery wreaked havoc on her body, sending her into early menopause. Although I did not fully understand it at the time, I remembered how hard the illness was on her. Her body. Her mind. I hated seeing her like that.

The papers I found told me something I did not know: my mother advocated for herself long before her diagnosis. Five years prior, she noticed signs of cervical cancer. There were serval symptoms, but her most constant one was pain. Lots of pain.

The doctors continuously dismissed her. Her pap smear came back clean, and they refused to treat pain that they could not locate. They called her delusional. They called her crazy. But she was right. Her cancer was on the part of her cervix that was too far into the body to detect through a standard pap smear, and the doctors neglected to do further testing that could locate cancerous cells further up on the cervix. Had they not dismissed her pain when she first presented it, she could have avoided the hysterectomy.

Five years. Five long years of ignoring her pain. And she documented it all, every symptom, every appointment, every doctor. They failed her every time. As I read on, I learned that the same thing happened to my grandmother during her early thirties, although she did not require the same type of surgery.

These documents infuriated me. How could this happen over and over again? Why are doctors so quick to ignore women with real complaints, as if women don’t know our own bodies? When a system is so flawed that it takes five years to receive a diagnosis, we can’t be silenced. We can’t wait for our pain to subside or pretend it doesn’t even exist in the first place. We need to be our own advocates because, even though self-advocacy may not provide us with immediate results, we are the only people we can trust to protect ourselves. My mother’s self-advocacy could not save her body, but it did save her life. She is brave, fiercely confident, and relentlessly vocal about her needs in the face of a world telling her to be quiet.

I am my mother’s daughter. I can be brave, too.

I started talking about the pain again. I saw several doctors and, eventually, a therapist. She was a godsend. We concluded that my pain stemmed from severe anxiety exasperated by starting college in the midst of a pandemic. Even though the pain stemmed from my mental health rather than my physical health, I know it’s just as real. The pain existed. And, after learning how to care for my anxiety through meditation, self-care, and journaling, it stopped.

Looking back on this experience leads me to a two-part resolution:

I. Know that the mind and body are connected. Neglecting one is neglecting them both. Keep the body active, well-rested, and fed. Keep the mind relaxed and focused. Journaling and meditation are just as important as exercise and sleep.

II. Listen to yourself! Your mind and body are advocating for you. Believe them, and repay them by advocating for yourself. Know that your experiences are undoubtedly real, and be prepared to ask for the help you need. Ask over and over again. Ask until someone listens. Make them listen. Make them hear you. You deserve more than pain. You deserve to be comfortable. You deserve happiness. You deserve peace.

This year, I vow to be kind to myself. I will take care of my mind and body, and I will listen when they try to take care of me. Even if I have to yell, I will be heard. I will be my own best advocate, no matter the circumstances.

This I promise. I promise for every woman who has been dismissed by doctors. I promise for the “crazy” women who sit in their pain because they have no other option. I promise for my mother. I promise for my grandmother. I promise for myself because, even in a system that tries to tell us otherwise, we all deserve our health.