Your Invisible Illness Is Valid
Sam Escobar

Fighting the invisible wolves:

Wolf by Chistal Yuen for

I was very sickly as a child. I’ve had a surgery and liver problems that kept me on bed rest for months at a time. I’ve had fainting spells and seizures often and my bones have never been dense enough to keep up with my football and tree climbing: I have broken every finger in my hands at least once as well as an arm, a leg and shattered an ankle. My vertigo and poor motor skills, or as some people like to call it clumsiness (stop doing that) are legend.

My matriarchs would always joke among themselves that we were lucky health care is free (in Uruguay.) When my family moved to the States I stopped climbing trees for fear that I would hurt myself and cause my parents a hospital bill. My teenage years went smoothly without any illnesses and after having my firstborn at eighteen and becoming responsible for two people, I developed into a more or less health conscious young adult. I ran a few times a week, exercised often and made sure to prepare healthy foods for myself and my child.

At age twenty five I conceived my second child. Newly married to my partner the only fear left in me about raising children on my own was gone. We eagerly embraced the new addition to the family and began preparing.

I have been pregnant more than once and I knew early on this pregnancy was different: on my first and second trimester I was admitted to the ER a few times for hyperemesis gravidarum unable to eat or sleep because of the constant vomiting made me very depressed. I began having extreme abdominal, intestinal and back pain, developed rashes and fevers.

Contrary to popular beliefs, pregnant undocumented women do not have any semblance of proper access to health care benefits during pregnancy in the USA. Basically once you go into labor, your care is covered by emergency medicaid. Oftentimes, hospitals have plenty grant money to cover the rest of maternity stays. At most, during the pregnancy you receive insulin check up, an ultra sound and that type of routine services at the local health department for a fraction of the price one would pay in a doctor’s office for the same services and maybe a WIC check if you qualify.

The many pains and discomforts which I noted every time I did see a health care professional were waved away as pregnancy symptoms.

Toward the end of my pregnancy, during one of routine urine analysis they discovered abnormalities and ordered a ton of blood, urine analysis and other tests. The health department recommended me to a Perinatologist office, after more tests, ran for days at a time an older immigrant doctor sat me and my mother down in his office to give us results. The doctor explained that at first they were looking for syphilis because one of my urine analysis came back with a false positive, it is routine when this happens to run the tests again, after three more negative tests they concluded that syphilis was not the problem (here my mother let out a long sigh of relief) “Oftentimes,” the doctor said, “a false positive for syphilis is actually one of the indicators for Lupus.” I was kind of shocked as he went on to explain that because he was not a Rheumatologist he simply could not give me a solid diagnoses. In addition to symptoms which we attributed to the pregnancy (like my butterfly rash) I needed further tests than the ones he was able to provide to confirm. He answered some of my mother’s questions (I wish I was able to ask a million more in retrospect) recommended me someone whom might help me and motioned to induce child labor now to save my deteriorating kidney functions. He looked me deep in the eye, in a grandfatherly type of way said “I beg that you go see my friend (the rheumatologist)” and suggested that “as a high risk pregnancy doctor, keep in mind that your body is sick and needs be taken care of before thinking of having a third child.” I promised I would even though I knew I would never be able to afford seeing his college, much less take care of my body without papers and joked that I was “not even ready for this one.”

Days later I gave birth to my sweet baby without complications. Four years ago in June to be exact. My body never recovered from the pregnancy though. I still do not have any health insurance and have not seen a doctor in years except when I go to the ER (for serious complications only!) I began reading up on autoimmune diseases and Lupus, going down the list of symptoms was both disheartening and encouraging: Knowing that there is a possible name and explanation for the combination of symptoms that plagued me throughout my entire life and they are all connected is a huge relief. I know that there are treatments available and am so looking forward to receiving better healthcare once I relocate back to Uruguay. At the moment though I am just doing what I can to get by. Listening to my body, feeding it the nutritious food it needs, keeping hydrated. Sometimes I see an old acupressure doctor, a friend of mine that helps manage my pain. I’ve become an expert in cooking vegan dishes and alternatives that do not irritate my IBS as well as being able to explain to folks when I am fatigued or in pain, or just need a mental health day to recharge. Doing all these things is a privilege I do not take for granted.

Sometimes I feel like I am fighting the same monsters of pain and sickness in different battles— My own body fights itself constantly and makes me physically sick. The pain of not being the same person I was not too long ago makes my emotionally sick. These feelings of shame, inadequacy, and self pity are like werewolves, they are valid feelings that once were real and human but darkness turned them into voracious monsters the old timey type whom can only be repelled by simply not answering their calls at the door.

The wolves are constantly at my (mind’s) door, I don’t win every time but for the most part, I try not to let them in: I know that this frail body doesn’t define me and that I should use it to the best of its ability and see each passing day as a gift. Seeing my children, my ideas and relationships grow is too important to let myself feel defeated.