It's nothing, really

PART I of a neurodivergent medical odyssey (hEDS, POTS, AuDHD)

I remember being five years old. I’m lying belly-down on my mom’s mattress, half of my body hanging over the edge of the bed. My mom is sitting on my thighs and urging me to keep going: Up and down with my torso, up and down, to strengthen the muscles in my lower back. I fucking hate it. I don’t want to do physiotherapy anymore. I’ve been doing it every day since I was two years old and today I really don’t feel like it. I stop moving. My mom yells at me. I let myself go limp and dangle over the bed, inspecting the floor as if there was anything interesting to see. Suddenly, I plunge forward. My face hits the bed frame and a sharp pain jolts through my mouth. I cry out and then my mom is there, picks me up from the floor and examines my face. She forces my mouth open and when she retrieves her fingers from my oral cavity, the tips have turned blood-red. “I’m so sorry, love”, she says, again and again, and now we’re both crying. I’m in pain and shock, and she is overcome by guilt. “I didn’t mean to”, she whimpers, and I know she didn’t. She probably didn’t think that the weight of my upper body would make me jolt forward if she let go of my legs. She makes a phone call while I am laying on the mattress – this time on my back, face up, trying to still the blood-flow from my mouth. It’s a lot of blood. Mucous membrane tends to bleed heavily. After the visit to the dentist I know that I get to keep the tooth. But it turns greyish soon after. It’s dead, they say. The pulp – the dental nerve – was severed by the impact. It’s just a milk tooth, though. We just wait until it falls out by itself.

I’m six. After school, I’m invited to my friend’s birthday party. She’s turning seven and I am envious that she’s now older than me. She has invited a number of kids from school and it’s very noisy. I don’t like birthday parties, except for my own. The kids are running about, screaming, bounding up the play structure and surrounding trees, letting themselves hang from branches and jumping back down onto the grass. “Coward”, one of the kids shouts at me. I pull myself together, get a move on, and make a clumsy attempt at climbing the tree myself. I really want to, I do. But as soon as my feet leave the ground, I don’t know where to put them. I’m unable to tell the distance to the branches over my head. The world is spinning and I feel dizzy. I don’t know where I am in space. I shrug and pretend that I don’t want to join the other kids on the tree-top, anyway. Instead, I hop back onto the ground and crouch next to a thick patch of grass, examining every little blade with utmost scrutiny. I’m really good at finding four-leaf clovers because I can spend hours looking for tiny details.

I’m seven. My mom is taking me to a psychologist. She thinks there is something not quite right with me. I get sick in the car on the way there and my mom has to pull over and throw open the door before I vomit all over the seat. We arrive late to the appointment and I’ll have to do whatever examination awaits me in two parts because we don’t have enough time due to the vomit incident. At the psychologist, they make me interpret patches of colors and draw my family as animals. I draw three cats: My mother, my father and me – even though I haven’t seen my father in almost four years. He’s an alcoholic. When the psychologist asks me why I drew my family as cats, I answer: Because that’s the animal that I draw best. The psychologist makes as face as if I’d just ruined her favorite trick. After the second appointment, my mom gets called in to speak with the psychologist. She’s getting my results. “And?”, I ask her as we sit in the car again? “What do I have?” “Nothing, really”, my Mom says. “You’re just very smart.” I’m happy to hear that, but I know it’s not the whole truth.

I’m eight. And I’m dreading the appointment that I have today. Once a year, my mother and I drive to the university clinic in Düsseldorf where we see a specialized orthopedist. For over six years now, he’s been assessing my progress. Last time, he wasn’t too happy with me. “We’ll give it another year”, he said, and recommended I train as hard as possible. My mom put me in competitive swimming classes after that. I go three times a week, and it’s the only sport I don’t hate, though I don’t like it very much either. I lose all my competitions, always coming out as the slowest, no matter how hard I try. But I attend classes without complaining, because if I don’t train, I will have to have surgery. On the spine. If I don’t train, they will cut me open, a cut the length of my arm, and put magnetic rods between my vertebrae. Or, if not the surgery, they’ll have to put me in a corset and I’ll be caged in like a turtle, unable to bend or move a lot at all. While we wait for the doctor to call us in, anxiety stifles my breath almost as if I was already wearing one of these metal shells. Finally, my name is called. In his office, the doctor examines me and nods. “Got a lot better since last year”, he says. I don’t allow myself to feel relief just yet. Not until I know what “better” means. No surgery better? No corset better? Or just undefined better? “If it gets a little better yet until next year, we’ll be able to proceed without any further interventions”, he says. The day after, back in my swimming classes, I swim as if there was no tomorrow.

I’m twelve. This semester we’re doing dancing during physical education. The girls in my class at the all-girls school that I attend have voted for that. I wanted to vote for swimming, but that is scheduled for next semester and wasn’t even on the list. I hate dancing. I always get confused with left and right, like that time when I was four and my mom had put me in a group of oriental dance for kids. We did a presentation for which we had to walk in a circle. I cringe as I remember the video that my mom took of me: all the other kids walk in one direction, and I stop, make a few steps in the other direction and then try to find my way back into the group, looking hopelessly lost. Only now it’s worse than when I was four. Now, everybody wants to be cool. The girls wear tight leggings and loose neon-colored shirts, and they tie their hair in high ponytails, and they laugh at everyone who doesn’t do the same. When we practice our choreography, I stay in the back of the hall, trying to draw as little attention as possible to myself, while I marvel at how some girls move so effortlessly, apparently feeling completely at home in their bodies. At least I’m not overweight, I think. That saves me most of their spite. I look at Maria who clearly has tried to hide her curvy shape under the loose sweater she’s wearing. No matter how much she tries to hide, she isn’t spared a single hurtful comment. She gets elected for the teams we form during ball games even after me, even though she’s much better at sports. At least I’m not her, I think with a stab of guilt.

I’m fifteen. Within three months, I have lost twelve kilos. This morning, I reached forty-four. It’s a good number, I think. Not as good as forty-three though. By now, I’m so thin that my trousers in size XS are slipping from my hips. My cheekbones look like they’re about to pierce the skin in my face, and today someone I know gave a shocked little shriek when they saw me again after two weeks. The look on their face was like a gift to me. I am absolutely determined to control this body that I’m in. And if it means I’ll have to destroy it. Maybe that is in fact what I want. Because it doesn’t serve me. It doesn’t obey me. How can my brain be so very efficient, and my body so flawed? I’m so sick of my fragile health, of always being the one that fights a cold over weeks. I lost count of the times that I had pneumonia as a kid, and all the antibiotics I took. I want to be strong. Perfect, even. Or not exist at all. Later, in class, I briefly lose consciousness. I haven’t eaten properly in weeks and feel like I’m wrapped in cotton. One of my classmates notices and urges me to go to the school nurse. I reluctantly agree. “Your pressure is 70 to 30”, the nurse says as she removes the cuff from my upper arm. “You could be dead.” “But I’m not”, I say, feeling elated, as I let my feet dangle from the examination table, sitting upright. I’m not dead. I proved to myself that I’m not that fragile. Take that, body.

I’m sixteen. “Make sure you don’t drop the ball on your feet, Daniela,” my sports teacher shouts at me. I can hear the disdain in his voice. I clench my teeth and murmur: “It’s Theresa, not Daniela.” I hate him. I hate PE. And I hate this dumb metal ball that I’m supposed to somehow catapult through the hall. Who even came up with this nonsensical activity? I just can’t seem to get it right. Each time I try, the ball drops down to the floor about a meter away from me. For whatever reason, I don’t know how to access and control the muscles responsible for the push that I’m supposed to execute, those muscles that I finally started to fuel with food again. Around me, some of my classmates are snickering. I know that a few of them enjoy watching me fail at something. I joined their year a couple of months back after skipping the eleventh grade. Still, I’m top of the class. Even though I always try to downplay my grades, it seems to satisfy something deeply human to see another person struggle when things usually come easily to them. If they only knew how many things don’t come easily to me.

I’m seventeen. With horror, I look at my fingers that have turned chalk-white. They look like they belong to a corpse. I pinch my right index finger with my left hand. There’s still feeling in it, at least. But my hands are cold and sweaty, as if they didn’t belong to the rest of my body. From white, they turn to purple. Once I reach home, I hold them under lukewarm water and almost jerk back as unbearable pain shoots through my hands. Now they’re tingling and crimson-red, as if I had let them sit on a sunny beach by themselves, while all my other body parts remained in late German autumn. I notice that it’s happening with my feet as well. Sometimes they turn bluish when I stand. In summer, I stop wearing sandals. And shorts, because the skin on my legs is mottled, with blue veins shining through and red patches around the knees that make them seem chubby and swollen. One day, my mom notices my fingers. For a moment, she looks worried, but then we somehow drop the topic. But in me, something changes. Suddenly, I’m afraid that there is something really wrong with me. What if it is something serious? What if I’m dying? The thought doesn’t leave me for years.

I’m eighteen. I’m sitting in front of a rheumatologist. About two years ago, my finger joints started cracking. My neck followed. Then my wrists, my entire spine, and eventually all of my toes. If I don’t intentionally crack my joints regularly, I feel stiff and immobile. A couple of months earlier, I started having pain in my limbs, too. It feels like the ache you experience when you get a fever. But not quite. It’s meandering through my body without me being able to pinpoint its exact place of origin. The doctor checks off my symptoms and then sends me to get my blood work done. A few days later, I have the results. No rheumatism. Good, I think. But then, what is it? I’ve started to see a therapist again after I was diagnosed with Hashimoto, an autoimmune disease of the thyroid. In therapy, I speak a lot about the feeling that something isn’t quite right with me. I struggle so much, socially, emotionally and physically. On the other hand, things that most other people seem to struggle with are ridiculously easy for me. I feel like there’s a frosted glass screen between me and the world, or as if I was constantly floating a few centimeters above the ground, like a ghost.

I’m nineteen. I started university a while ago. Studying law doesn’t excite me as much as I had expected, and though I hoped that university would be a new start, it turns out that the kids that go to university are the same kids that attended school before. I have long since stopped going to lectures and spend most of my time reading books at home or exercising. If I can exercise. Lately, I’ve been feeling unwell all the time, as if I was coming down with a cold that never really emerges. I’ve had a sore throat for a few days, but it has disappeared already. Since then, I’ve been having a low-grade fever every day, though only for about thirty minutes, starting whenever I climb the stairs to my flat or vacuum-clean my room. I can feel my temperature rising as I break into a sweat, tear my jumper off and lie on my bed, panting, checking the exact number on a thermometer. I become obsessed with the thermometer. My temperature regularly rises up to 37.7 – not technically a fever, but also not entirely normal – and within thirty to sixty minutes it goes back down to 36.9. At first, I thought this must be an aftereffect of the cold, but it’s been weeks since then. I’m starting to worry. I google. And I learn that a low-grade fever over weeks often is an early sign of certain types of cancer. A wave of panic washes over me. The next day, I go to see my general physician. She takes blood samples and holds a stethoscope to my heart. “There is a little sound that I’d like to examine further”, she says, and I’m immediately alarmed. “What does that mean?”, I ask. “Could be a sign of myocarditis”, she says, and patiently answers all my questions. On my way home, I walk slowly, feeling like I was walking on thin ice that could break any moment and pull me into the deadly waters underneath. The doctor calls me the next day to say that all my blood work is normal. All-clear. The mysterious low-grade fever returns regularly from then on, whenever I’m recovering from a cold or under a lot of pressure.

I’m twenty-one. I live in Berlin with my boyfriend now. My mom calls me and tells me that she has cancer. We don’t know if she’ll survive. My health anxiety intensifies. By now, everybody knows that I’m a hypochondriac. My boyfriend is often annoyed with me because I obsessively google symptoms, trying to find an explanation for what I’m experiencing: The nausea, the constant exhaustion, the sudden faintness after getting up. I’m also in pain a lot of the time. My jaw is tight like a vise, and my shoulders and neck muscles constantly hurt. The only thing that brings me temporary relief is working out. Through sports – five times a week – I keep my eating disorder in check and make the constant tension in my body bearable. If I am able to train, that is. Because something seems to be going on with my body most of the time. A cystitis. A cold that doesn’t go away. The low-grade fever returning. My health anxiety jumps from one symptom to another. Something isn’t right, I’m convinced. No doctor ever finds anything. Family and friends roll their eyes at me whenever I come up with something new. Some days, I know that I’m probably being irrational. For example, when I discover two tiny lumps in my groin that I’ve never felt before, and my brain immediately goes to ovarian cancer. That is what my mom has, anyway. Of course those lumps are lymph nodes, and they’re perfectly fine as they are. Other times, I’m not that sure. Why does my vision often go blurry? What is that stinging pain behind my left eye? And why does my heart sometimes skip a beat?

I’m twenty-two. My mom has made it through chemo and is cancer-free. I’m in the middle of the preparations for my first state bar exam. My weeks are spent in the library where I crouch over books trying to remember all that I need to know for this most merciless of all exams. I’m constantly scared. I’ve had an MRI of the brain a few months ago because the fainting spells didn’t stop, and my vision got blurry more and more often. Also, my fingers had started tingling from time to time. The findings have been ambiguous: There were some lesions in my brain that are probably nothing. But they could be a symptom of an atypical form of multiple sclerosis. I need to go check again in a few weeks. If the MRI hasn’t changed, the findings are irrelevant. The second scan doesn’t show any changes. For a few days, I’m relieved, until I start having a ringing in my left ear. The tinnitus is subtle, but constant. The otorhinolaryngologist confirms that everything is alright with my hearing, but have I ever considered multiple sclerosis as an explanation? I head right back to my neurologist, and convince her to perform a lumbar puncture on me: a medical procedure in which a thin, long needle is inserted between two vertebrae in the lower back to extract spinal fluid. The doctor is reluctant at first, saying that with my last MRI results, multiple sclerosis is almost certainly excluded. I don’t know what almost certainly means. It’s an oxymoron. Anyway, I want certainty, because all I know is that it is not normal to see the letters smudging before your eyes whenever you try to read a book. Finally, the doctor gives in. I feel my blood pressure plummet when the doctor retracts the needle from my spine, but I don’t pass out. A few days later – my back is still hurting from the procedure – the results come back. I don’t have multiple sclerosis. I’m relieved, of course. But part of me also wishes they had found something that could explain what is wrong with me.

The symptoms continue. Eventually, after an odyssey of several years, I arrive back where I started my health journey: At the orthopedist. I’ve been here before, some months back, and the doctor had briefly looked at what is left of my scoliosis and checked the mobility of my neck. He had prescribed massages and fango therapy for the pain. This time, the doctor takes me more seriously. I’m going for another MRI, this time of the cervical spine. I’m twenty-three when the scan shows multiple small cervical disc herniations and early signs of degeneration in my neck. The report reads like something belonging to a much older body, but the doctor doesn’t bother with further questions or explanations. I go home feeling relieved. I wanted them to find something. I can do physiotherapy, they say, and for a while, I do. It doesn’t really change anything, though. But that doesn’t matter anyway. What matters is that there is nothing really wrong with me. I can attribute most of my symptoms to the spine degeneration. By now, I have gotten used to being in constant pain. I have also internalized that how I perceive my body is wrong: All the symptoms that I experience don’t seem to be abnormal. Otherwise, someone would find something more apt to explain how it is all connected. By now, I mainly go with what others say about me: I’m a hypochondriac. This is backed up by how others react when I tell them about my symptoms: “Well, sitting around all day just isn’t healthy. You should do yoga.” I mention that I work out five times a week, and have done so for years, but eventually, the message is always the same: Everyone has back pain. We all feel dizzy sometimes. Have you tried changing your cushion? You are too sensitive. Stop concentrating so much on how you feel. Pull yourself together. And I do. I pull myself together and learn not to listen to my body, not to take my needs seriously. By now, I’m sure everybody feels this way. I just handle it worse than most.