I was 12 and I am 24. I was healthy and then I was sick. I was an average kid who liked to play with dolls, compete in sports, and have sleepovers with my friends. I had themed birthday parties and even hosted the first co-ed pool party in the 5th grade. I was healthy and then I was sick, and there was no warning. Symptoms were hardly symptoms until I was diagnosed. Who would know what was to come? The mystery of my rare condition and conflicting diagnosis’ and treatment plans would prevent my understanding in the years to come. I never knew all that I lost in the doctors’ waiting rooms. I knew what it felt like to have medical students hover around me pinching and poking me like Wilbur the pig. Helpless. Vulnerable. Invisible. I knew how it felt to have my parents bickering in the car about appointments and traffic, missing work, and worry. So much worry. I knew I was never doing enough to please my parents-enough physical therapy exercises, enough vitamins, enough effort in sports. But I never knew what was lost in the doctors’ waiting rooms. When you’re just a kid, no matter how sick you are, or worried your parents get, this is just your life. It’s all you know. You almost forget what life used to be like. It’s gradual and it’s sudden-and you have no answers to anyone’s questions. What’s wrong? Why so many doctor’s and so few answers? Why so many treatments and so few results or progress? Why can’t I play after school? I never gave much thought to the most obvious question: Why me?
I am fit, health conscious, and in-tune with my body’s needs. When my peers neglected and abused their bodies, I continued to love it and be kind despite increasing pressures to hate it as we are taught. Boys, drugs, drinking, eating disorders, cutting, celebrity obsessions, promiscuity—so many methods to hating our bodies, and yet I learned from a young age that I had to protect mine-it was the only one I had and my life depended on it. I was afraid of getting pregnant, developing more mysterious illness’, dying, getting in trouble, feeling pain, overdosing, sexual assault, getting a bad reputation, and most importantly, upsetting my mother. I was afraid of too much sun exposure and yet doctors suggested it was good for my skin condition. Was milk good or bad for a developing girl? Was birth control protecting or hurting my body? In a world where accomplishment and productivity are prized, I discovered my wellness depended on slowing down, doing less, and living in the present moment. I made some mistakes, but generally I survived my illness and my young adult years with few scars and a newfound sense of holistic healing and health.
One month before I am to start graduate school, I am suddenly covered in hives. I’d always been grateful not to have any allergies, in fact, I sometimes joked I was bionic since I rarely suffered side effects from the plethora of medications doctor’s prescribed. With a major life change around the corner, I took the skin reaction seriously and consulted several doctor’s in one week to rule out serious virus’. The doctor won’t see me and I need to be seen. I tell them exactly what my mother advises me to say and in the end they listen to her when she calls after my failed attempts to get an appointment. She demands they see me, and doesn’t give them a chance to say no. She’s fierce, dramatic, and ruthless.
In the waiting room, I am transported back 14 years. My parents are with me again, and I suddenly feel the seriousness of the situation overcome me-or is this just triggering old memories? As I complete paperwork and explain I’m not a new patient or an old patient-I was here 14 years ago. The waiting room is awful. Our time has no value to anyone, nobody gives us updates—we wait hours to be seen. There are no toys or things to distract myself. No kids to play with. I’m 24 years old and yet I’m seeing everything through the eyes of my 12 year old self. How many waiting rooms had I sat in? How much of my childhood was lost in those rooms? How many tense car trips with my parents had I endured? How depressing is this! How many fingers had prodded me without any consoling, validating words?
I asked if my parent’s could come in the room with me, remembering that nobody had asked me that as a kid. I’m an adult in a small room with my parents and there’s no respect for my privacy when it comes to changing into the medical gown. Open in the front or the back? Can I keep my underwear on? My mother criticizes my underwear-I’m always doing something wrong. The doctor will witness my red underwear-oh no. The doctor asks how I’ve been. He’s a dermatologist/auto immune specialist and hasn’t aged somehow. He hardly touches my skin or looks at my body. This is the thorough care we had waited for. My father jokes about my body and illness, always trying to connect with the doctor in the same way: “I always tell Jocelyn she should be an ice skater-she could never broke those stiff ankles!.” My mother is furious-she never appreciates the timing of his humor. It’s always life and death with her. I recall the supposed shift to patient centered care and I wonder if there really has been a shift in how doctor’s relate to patients. Something feels different. I am more of a person than I remember when I was just a kid trying to sound sure of myself when I had no clue if I was telling the truth or lying and how my answers would impact me. This time, I knew who I was and I knew most of the answers to his questions.
The results are negative. No serious virus. Relief. My hives persist, one month later. The ominous line between health and illness loom in the air. We’ll probably never know what caused it and it may last for 6 months. At the end of the day, there will always be more questions than answers. We will continue to plan for unknown futures, and take windy detours as we journey.
Does my story resonate with you? I’d love to hear from you! Comment below or write me at SchurJocelyn@gmail.com