The following is a interview with Anna a sixteen year old living with EDS, fibromyalgia, borderline personality disorder, autism spectrum disorder, anxiety and depression.
You can learn about EDS here http://ehlers-danlos.com/what-is-eds/
Borderline Personality disorder explained https://www.nimh.nih.gov/health/topics/borderline-personality-disorder/index.shtml
Autism spectrum disorder explained https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml
Q: What is your name, age, and disease/diseases? What does your illness do to your body (how does it make you feel, how did it change your life)?
A: My name is Anna Beatriz de Brito Angelo and I am sixteen years old. I have Ehlers-Danlos Syndrome, which is a collagen synthesis defect that implicates a genetically-heritable amount of symptoms. The aforementioned can include several kinds of pain; ligamentous, tendon and muscle laxity; skin, organ and blood vessel fragility and comorbidities (in my case, fibromyalgia [syndrome that causes sensibility and generalised pain and fatigue] and irregular gastrointestinal behaviour). A comorbidity is another condition that comes along with the main one. I am also neuroatypical, which means my neurodevelopment is unusual. I am suspected to have Borderline Personality Disorder and Autism Spectrum Disorder. As both titles manifest, none of the two are diseases, but disorders. Since they are also relatively rare and ease the probability of me to acquire mental illnesses, such as the ones I live with (anxiety and depression), I concluded it was worth the mention. Anxiety accompanies me during the day, transforming a small issue in an incredibly gigantic problem. Depression does the same and even goes beyond by making me feel less worthy than the ground on which I step.
Q: When did life change for you?
A: I’ve always felt that I was unusual for some reason, perhaps it was instinct. A little kid who prefers observing than playing, isolates, speaks with enormous verbosity and has an incredible vocabulary is definitely not common. I already had some issues back then such as the first anxiety and depression manifestations, which weaved themselves as tics, obsessive-compulsive and body focused repetitive behaviours, coordination difficulty and constant feeling of emptiness, leading to suicidal tendencies. I grew up to be a rebellious adolescent, filled with anger, mood swings and frustration and that was when I started to self-harm. This aggravation, along with the fact that I became anorexic, was already a violent change, however, it wasn’t the end yet. More than a year and a half ago, I had Zika, an epidemic disease here in Brazil, vectored by a mosquito. Little I knew that my body would never be the same. That was when Ehlers-Danlos Syndrome awoke.
Q: What was life like before disease?
A: Before the debilitating symptoms of Ehlers-Danlos Syndrome, I was fighting against depression and anxiety and it was already a struggle. After I became sicker, life got even more disorganised. All I know is that it was very different: I was flexible although had no great quantity of pain; honestly, I can’t exactly remember how it felt, it just seems so distant…
Q: How has your disease changed your life?
A: From the greatest to the minor ways. I can’t forget it, even for a second and it’s really disappointing when I am walking my way to the classroom and my knees snap violently or my heart starts racing and I get dizzy. It is boring when all my friends are running and I can do nothing but watch them because I know that running represents a risk. It is sad when I am laughing and I suddenly stop, reliving all of that pain. It is terrible when my family, friends or even doctors tell me I am exaggerating. I try my best everyday not to forget how to be myself.
Q: Please describe the best you can a day in the life of you?
A: Challenging. I wake up, exhausted, knowing that I will have to cope with my sensorial difficulties and obsessive thoughts. I follow the order of getting dressed and take a second to remind myself of how much I hate brushing my teeth. Going down the stairs hurts. Being driven means it’s music listening time, when my imagination flows. I arrive at school and eat, thinking about how I shouldn’t be eating or don’t eat, thinking about how I should’ve did it. Then I climb up the staircase holding on to the handrail as my some sort of invisible knife stabs my joints. I listen to the classes, waiting for some classmate to call me weird, since it’s already part of the routine. I lay my hands against my ears not to hear the noise because, believe me, Brazilian people are loud. I breathe and then feel worthless next to the boy I like. My friends hold me and everything gets fine enough for me to handle another day. Back to home, I have lunch with my ghosts and spend some hours listening to my favourite songs, planning what to write. I sleep until the next day, not without a basic late-hour awakening due to nocturne tendinitis. And then I wake up again, knowing that, despite following routines, whereabouts and even myself, during any moment, can and will get out of control.
Q: What was/is the most challenging thing you have faced with disease?
A: Judgemental people and their lack of awareness and comprehension.
Q: Do you find that you can keep up with others?
A: It depends on many factors.
Q: What would you tell others living with your disease?
A: Your struggle is a part of who you are, not your entireness, so never allow yourself to forget the best ways of smiling.
Q: What would you like to tell others that don’t live with chronic disease?
A: Please, always wonder if what you are saying should be empathetically voiced to the person who actually is going through the struggle. If you’re not adding hope or comprehension to my life, I will politely ask you to keep your mouth shut.
Q: What have you learnt on your journey?
A: Journeys are meant to be great and greatness comes from the hardest trials.
Q: Is there anything you would like to add about your journey?
A: I wouldn’t trade a day of painful learning for a month of blissful ignorance.
Thank you for reading Anna’s interview. Thank you Anna for giving us a glimpse into your life.
Remaining hopeful always.