But, You Don’t Look Sick

As a young adult, I dreaded the moment I would have to give oral presentations in Uni, because that was just the ultimate humiliation (at least I thought so, up until that moment). I remember asking my professors if I could please present sitting down, and they would all reply in chorus “But Gianinna, you have a great way to captivate the audience with your presentation skills, there is no reason to be nervous, don’t worry, you won’t pass out”. But, oh how I did. I did pass out. But no, it was not because I was nervous, not at all, I loved explaining a topic that I dominated, I loved being the center of attention to debate over something I had so closely studied and scrutinized, every question asked gave me fire to spit out all right answers. It was always my moment to shine and show everyone just how much I knew. But still, I would vomit the first row of the class and pass out. But why? Why did my legs suddenly turn purple and duplicate their size? Why did my pulse lower so drastically and my soul would jump out of my body? Why did my own body betray me like this and cause me such shame?

Bus rides. Banks. Supermarkets. Food courts. Concerts. Public bathrooms. Hotels. Beaches. Airports (these were biggest b*tches of all). These are all just a few of the multiple places I avoided at all costs, to spare me the embarrassment and also the uncertainty of “IT” coming to attack me again. Do you know what it’s like, to look like any other 20 year old girl, thin, long perfect hair, glowing skin, slender figure, but, to use the priority seat on a bus, for people to give me gnarly looks “She shouldn’t be sitting there, shame on her”? Indeed, I look like I should not have been sitting there, but you should not be judging without knowing either.

It took me 15 years of people telling me the causes to all my mystery symptoms (or tantrums, as some ignorant with a medical degree would call it) being “anemia, anorexia, stress, depression, drama”. As a teen, it was diagnosed as depression, because I could not sleep for days, weeks at times. I tried to explain to them “but, there is a feeling in my legs, a terrible pain, that I can’t find a way to make it go away, and it makes impossible to sleep, and no matter what I do, I can’t stop hearing my heart pounding in my head.” Of course, doctors thought I was just delusional. They sent me sleeping pills and “happy pills” to make me feel better. Needless to say, they just made it worse.

At age 17, I was getting weak. Too weak to be normal and independent. Too weak to want to cook, too weak to shower standing up, too weak to brush my teeth.

At age 19, I would pass out more frequently. Locking myself in public bathrooms. The body pain was becoming unbearable.

At age 20, I felt like I was a prisoner to my own body, ready to surrender at any given moment. I became fully dependent on having a sitter as well. Someone to pay for my food. Someone to carry my bags. But, how could I have a caretaker and not a diagnosis? Was it all in my head? Was this indeed some strange mental illness, and I was going crazy? By this point, I must have been to 12 cardiologists, and all of them told me to go to a psychologist. One of the even had the audacity to tell me “You are a woman, who works full time and studies full time, our bodies are not made for that, we are made to be delicate beings, like flowers, so this is just your body telling you to step back”. That made me a bit too angry, but not mad, because I knew, I was not mad, I was not delusional, I was not being a drama queen (at least not with my health). I always knew that I was truly sick but what exactly was wrong with me?

At age 21, my body gave in. I had one of my typical episodes, where I lost sensitivity of my extremities, my vision gets blurry and I need to sit, if not I would expose my lunch all over to the person beside (yes, this is my nicer way of painting with words the expression of me vomiting, but oh well, I still managed to say vomit again, sorry not sorry). But this time, I did not recover. This time it felt as if there was a line dividing the right and left side of my body, paralyzing half of my face. I was convinced I had a stroke. I was rushed to the hospital and had infinite amounts of exams done. The night guard doctor finally came back with the results and said “I think, the problem is indeed with your heart, but the electricity in your heart”. This was the first time in my life, I felt like someone gave me a small light, a tiny light, that there was something on the other side of that infinite black tunnel.

At age 22, I got a pacemaker. As sudden as the news came, the healing did as well. How is it possible, that this little helper was going to be the solution to me not being able to apply my mascara standing up, without smudging it 10 times because I was trying to catch my breath? This little machine represented hope, hope to having a normal life. It also let me show the world I was not crazy. That first year I remember wearing that scar like a medal of honor. This little metal friend, has become my ally in life. We have had our misunderstandings and hiccups, of that I may share later on, but this friend, Deedee, as I like to call her, has become the reason of my second chance at living, or better said, my first real chance of living what I thought to be a normal life.

Deedee has taught me to trust, to believe, to persevere, to strive, to run, to climb, to jump, to love. Deedee has taught me, that I am capable, that I am strong, that I am worthy, that I am powerful and that I am me, and that is an amazing person to be, if I am being quite honest with you.

So thank you, to that young college student night doctor, whose name I can’t recall, but I remember you had glasses, a very quirky smile but above all, you were also the first person in the whole wide world to believe me and tell me that something was indeed wrong with me.

And thank you Deedee, for “stepping in” when I need an extra push.

So with all of this being said, would it have been better to look sick and have people not treat me unfairly, for using the special seats? Or was it better to be fighting a war against my own body, while still being able to look young and beautiful, and fight a battle between life and death day to day all on my own, like a secret mission? The latter worked wonders on forming my character, by the way.

Regardless if your illness is invisible or not, persevere. Keep that spark alive, that even if it takes one year, or 15, or 30, there IS a light at the end of your tunnel, it’s just that some of us have longer or shorter ones than others. I guess it all depends on what life wants to teach us that day.

And if you are the one seeing someone go a bit slower at life, sitting down a bit more often, seeing your friend happy and fine, but with a hint of sadness in their eyes, ask them why, before you judge.

We never know who is around us. We don’t know the stories behind every set of eyes, every smile, every scar. Be kind. Be patient. But above all, show empathy; because everyone is struggling with their own battles of which we know nothing about.

(Giannina Gutierrez, Ninna, is a young woman from Costa Rica, currently living in Amsterdam. Working in finance for a MedTech company during the day and a passionate writer by night, Ninna finds joy in sharing her life experiences growing up in the Global South, while fighting for her health, female rights, education and other topics that are not unknown to many women aspiring for more in life)