After we first got married, my husband began keeping me company on the drive to pick up medications for my chronic illnesses. During these trips, it was hard for him to miss my shaking hands and tears.
“Honey, you okay?” He’d ask.
“Yeah… I’m just sorry that we had to go to the pharmacy today.”
Why? I didn’t fully understand myself.
As a child of immigrants who came to America with very little, I was constantly shamed for being sick and for the copays my family was billed for my appointments and medication. In my parents’ world, sickness wasn’t an option; it meant that you were weak or doing something wrong. If your legs still let you walk and your arms could move, then you were fine and it was time to go to work. For my parents, the cultural effects of growing up in European poverty and not having as many options as American-born people instilled in them a sense of mistrust in modern technology, medicine, and ethics.
Around 10 years old, though, I was diagnosed with chronic migraines, and around 13, I was diagnosed with polycystic ovary syndrome, too. A few years later, I found out I also had irritable bowel syndrome. Each condition rattled my days with pain, but when I tried to talk to my parents about it, I was met with lectures: “You need to eat better, try some raw garlic,” or “Get some fresh air, it will fix everything.” I would “yes” them to death and change the subject as fast as possible, while my stomach rolled with anxiety.
Even after my migraine diagnosis, my mom stuck frozen sliced potatoes to my forehead to “cure” them. And when my great-aunt swaddled me like a baby and prayed in Italian while tracing the sign of the cross on my forehead, I could only smile and go along with her efforts, sneaking Tylenol when she wasn’t looking. Taking the medicine made me feel like I was doing something bad, that something was the matter with me if I needed it to cope enough to go to school.
At home, acting like nothing was wrong became the norm, even when everything was wrong. At just five years old, for instance, I nearly passed out from puking. My mother had set me up on the couch with a bucket and told me not to make a mess, while she helped my younger brother put together his new train set from Christmas. I tried telling her that I was really sick, but she didn’t believe me until after it had gone on for hours. Finally, she caved and took me to the hospital—just in time to save my appendix from bursting, but not enough to prevent an infection from spreading through my system. I was in the hospital for over a week, and I can still remember my parents’ complaints afterwards.
“Can you believe it? This bill is thousands of dollars,” my dad said to my mom one night when they thought I was asleep, before adding, “There’s always something wrong with her. She makes herself sick.”
During the recession, when my parents were struggling to stay afloat, my mother told my teenage self that she didn’t have the money to help me anymore. I had to choose: Work more hours on top of school and extracurriculars, or stay in pain. At that point, I felt like enough of a burden that I figured it made sense for me to pay. After all, I was the one who was sick, not my parents.
In college, however, I simply could not afford my school’s fees, food, and medication at the same time, so I tried coming off my migraine medications. Cutting off cold turkey made me dizzy, nauseous, and full of mood swings, and when my migraines came back in full force, I nearly passed out from the pain and ended up in and out of the hospital. The treatment I needed—diagnostic tests including an endoscopy, colonoscopy, gastric emptying test, and laparoscopic surgery—were too much for me to afford on my own, so I had to ask my parents for help. They paid for one test, but after the results came back clear, refused to help with the others. By then, the pain was so debilitating that I could hardly go to class, and I had to quit my part-time job.
Over the years, my dad’s accusation from my childhood about me making myself sick kept replaying in my mind. Those words, plus my parents’ constant complaints about how I was wasting my time and money on each doctor’s appointment and their labeling of me as a drug addict for my medication use, half-convinced me that my health problems were all in my head—despite the very real pain I was experiencing.
But after graduating college in 2015, things changed. I had a full-time job and a supportive fiancé, and now that I was old enough to properly advocate for myself with medical staff, I could get the other surgeries needed to diagnose the new and chronic conditions that had been causing my pelvic pain, body aches, and fatigue for years. And I’m so glad I did. During my laparoscopy, doctors pulled a fallopian tube 10 times the normal size out of my body. It showed that my fertility was in question, unfortunately, but the pictures of the infected tube, scar tissue, and damage in my reproductive tract meant that I could at least finally prove to my family that my illness was real. When my parents saw the pictures, they were shocked; my father even kept them on his phone so he could look at them again later. Thanks to that proof, their attitudes about my conditions began to change, even if they still stayed skeptical of modern medicine.
Soon after the laparoscopy, I got cleared by my doctors to try for a baby with my then-fiancé. By the time we were married, I was five months pregnant, and I enjoyed creating a new family that valued medical care. My husband knew that anything health-related increased my anxiety, and he had witnessed my parents’ dismissal of my health conditions. He never blamed me for having a high-risk pregnancy and never complained about hospital bills or far-away appointments. But still, I felt like it was my fault that my pregnancy was difficult, and my fault that I later spiraled into postpartum depression.
Each time a doctor’s appointment would come closer on the calendar, my heart would speed up and I’d hyperventilate. I’d cry while apologizing to my husband for the costs and time, even though he reassured me that he loved me and didn’t mind taking care of me. To convince me that I wasn’t a burden, he would even happily pay for my monthly meds or schedule my appointments on occasion. His words and actions would ease my anxiety for a day or two, but the problem was that his empathy was still not enough to convince me that I didn’t need to feel guilty after 18 years of listening to my parents. I still felt like a bad person for simply existing—for needing medications, or time to heal, or even just a nap.
It wasn’t until my husband suggested I start therapy that I knew I needed to address some of my guilt over being sick. I’d realized that even if my illnesses didn’t cause my husband to resent me, my constant anxious rants and stress would eventually ruin our marriage. I needed to believe that I was enough and love my disabled body in order to let our relationship flourish.
So I went to counseling, and my husband came with me for support. In my sessions, I addressed my past with my family and came up with new techniques to deal with my parents; eventually, we came to an agreement that we wouldn’t discuss my health unless I brought it up and that if they acted dismissive and rude, I would change or end the conversation. My therapist also helped me learn to recognize my negative thought patterns and combat them with the truth. And after a year or so, I started doing better. I began asking for help more, and coping with my fears by writing them down and then talking to my husband about the actual reality of each situation. I also started to rejoice in the good things my body had done for me, like giving birth to two healthy children, as well as the fact that I’d found a successful career writing from home while taking care of two children despite my pain.
These mindset changes have worked. When I was diagnosed with chronic microscopic colitis just last year, and rheumatoid arthritis this past month, I found myself spiraling into a negative headspace. But thanks to therapy and the help of my husband, I was able to recognize those thoughts sooner by pinpointing the cause of my anxiety, and since then, I have been able to give myself more understanding. I may still occasionally need a little nudge in the right direction, but at the end of the day, I have learned to love all of me, set boundaries with my parents, and most importantly, allow myself to be loved unconditionally.