Chronic

Am I out of the woods?

She lets herself hope from the sterile waiting room. It’s familiar. Not because she’s been in this room before but because all waiting rooms take up the same position in space and time. Liminal spaces connected through a sense of dread and misplaced hope. She’s called in. The nurse mispronounces her name. He takes her blood pressure. Looks great! She steps on the scale. It shows her weight in kilograms and she’s silently thankful that she doesn’t have to know how many pounds she’s lost since her last appointment. The nurse takes down the explanation she’s uttered dozens of times. The explanation that already lives in her chart but they make her relive it over and over to make sure the trauma is fresh for the new doctor. The specialist comes in after fourteen minutes.

I heard you’ve been having a little bit of nausea?

The girl wants to scream at her: I can’t eat! I can’t work! I can’t live!

She recounts the nights of sleeplessness with her head in a toilet bowl, the days of work feeling faint because the only thing she could stomach were four Ritz crackers at exactly 10:30am, the declined dinner invitations and friends who drifted away. The doctor’s brows are furrowed and she nods along as if she has any idea what the girl is going through. The doctor orders labs and refills her Zofran prescription. Then they schedule the procedure.

Am I out of the woods?

She’s in a hospital gown this time. She’s wrenched her head as far left as it will go so she doesn’t accidentally catch a glimpse of the IV protruding from her right arm. Her fear of needles isn’t as bad as it used to be. She’s had too much practice lately. They roll her gurney to the operating room. The same doctor explains what the girl has spent the last month reading about on Reddit and WebMD.

There is a tiny camera attached to the end of this tube that we will use to take a look at the inside of your stomach and find out what’s been causing you all these problems. But you’ll be asleep and won’t feel a thing!

She tries to fight the anesthesia just to see if she can. A nurse is counting down from ten. The girl starts to fade at seven. The last thought she has before drifting away is of her throat closing around the tube. Choking. Heaving. Expelling everything wrong from her body.

Am I out of the woods?

She slurps down the apple juice while she can. The anesthesia doesn’t even let her think that it might make her nauseous. It’s freeing. As payment, the anesthesia takes hold of her consciousness for a few seconds? Minutes? Hours? She snaps back to reality and suddenly the doctor is sitting across from her with information meant for someone more sober.

First piece of good news is that your labs look great!

Fuck labs. They shouldn’t even be called labs. They should start calling labs Alexander because they’re always so fucking great.

Second piece of good news is that your stomach is in great shape. No ulcers or signs of gastritis.

So… what’s wrong with me?

We didn’t find evidence of anything wrong with your stomach.

Am I out of the woods?

You’d think the stomach doctor and the poop doctor would be the same, but here she is waiting for another specialist in a room devoid of personality save for the Bristol Stool Chart hanging directly in her eye line. There are seven different types, according to Bristol. They each come with descriptions that verge from funny to nausea inducing. Sausage-like. Rabbit droppings. Applesauce. The only first impression she gets from the doctor is that he seems to be in a hurry to be rid of her. His questions are rapid fire. She’s familiar with this type of doctor. They got into medicine to prove they were smarter than everyone else, not for a love of caring for their fellow human. His only priority is compensating for all the late patients before her by careening through her appointment so he can be home in time for dinner. He asks her how often she passes stool.

Uhh… like every three or four days? Maybe more?

He writes something down. He asks when she last defecated. She can’t remember. He writes something else down. He tells her to add more fiber to her diet, eyes never even meeting hers, and sends her on her way with no follow-up appointment on the books. She hopes dinner tonight was worth it.

Am I out of the woods?

She sprained her ankle because under no circumstances can she catch a break. Despite the pain and the limping, it’s nice. Straightforward. The physical therapist knows exactly what’s wrong. She gets to watch her body heal. It’s comforting to know that her body is capable of that. The physical therapist tries to small talk with her about all the stomach-related things he obviously read about in her chart. Four monotone replies in a row clue him in that she doesn't want to talk about it.

She has to suppress the urge to kick the physical therapist when the range of motion test sets her ankle on fire. He apologizes and it sounds mostly sincere, if a little routine. He tries the healthy ankle to juxtapose. His eyebrows shoot up to his hairline. He takes one. Two. Three beats.

Are you hypermobile?

She shrugs because she has no clue what that means. He fires off more rapid fire questions the way doctors love to do. Were you a flexible kid? Kinda. Can you touch your hands flat on the ground? She’s never tried. Have you ever dislocated a joint? Once in eighth grade P.E. Try touching your thumb to your wrist, like this. Her thumb lays flush with her forearm. The lightbulb is visible above the physical therapist's head. After the rest of the ankle shenanigans he flashes her a knowing smile and puts in a referral. He says it’s another physical therapist. One that specializes in hypermobility.

Am I out of the woods?

She doesn’t actually know what the purpose of this appointment is. This hypermobility thing is not at all on her radar. Not when every second of her life is dominated by the constant urge to stick her head in a toilet bowl for a second of relief from the everpresent nausea. There are no dreads. No hopes. No fears. Not this time.

A man with kind eyes pronounces her name correctly and brings her into his office. No nurse acting as a middleman. She sits on the bed. Legs and arms crossed. He smiles sadly at her.

I read your file. You’ve had a really hard year haven’t you?

She doesn’t answer with words. The tears that burst out of her like a river finally winning against the dam do the talking for her. He listens like they took the word "physical" out of his title. Not a single doctor has acknowledged the toll it has taken on her. She admits she sometimes felt like she no longer wanted to be alive because every waking second in this body is pain. She’s never told a medical professional that. Doctors take suicidal thoughts too seriously and then suddenly they only care about that and no longer the pain that caused it. He doesn’t, though. He nods and says that feeling is totally understandable.

No offense, but why am I seeing you?

Let me take a look at some things, then I’ll explain.

He proceeds to investigate each and every one of her joints. Ankle. Yep. Hip. Mmhmm. Shoulder. Wow, this one’s extra loose. She stays quiet because she doesn’t have enough information to ask questions. But each affirmation somehow feels nice. Confirmation of something happening with her body, whatever it may be.

Examination over, he sits on his stool with a bright smile across his face. He tells her she’s hypermobile. So what? He hits her with a series of questions. Rapid fire, not because he’s in a hurry but because he’s so enthusiastic he can’t help himself.

Do you feel dizzy if you stand up too fast? Every time.

Do you have a hard time tolerating cold or heat? She thought she was just being a baby.

Do you get severe side effects even on low doses of medication? How did he know that?

He describes everything that’s ever been wrong with her. With each confirmation his smile grows wider. He’s got her figured out. He tells her all about dysautonomia. Somehow despite spending hours googling, this term is completely new to her.

The body has certain functions it does automatically, like digesting and regulating temperature. Your body isn’t performing these functions optimally. Dysautonomia is common with Hypermobile Ehlers Danlos Syndrome- which is why we assessed you for hypermobility- and I can’t know for sure without further testing but the signs are all there.

She doesn’t say a word. A doctor has never given her a clear answer before. She doesn’t have to placate them when they apologize for not knowing, not this time. He’s not sending her off to another specialist. He actually knows what’s wrong with her.

Can you fix me? Tears of hope bead in her eyes.

His smile falters.

Am I out of the woods?

Life post-chronic illness revelation was exciting. At first. She finally understood her body. Stool softeners sped up her digestion and poof! The nausea wasn’t gone for good but she could finally eat again and that felt like enough. At first. All the silly aches and pains that she brushed off as normal life suddenly took up more of her thoughts. Apparently non-hypermobile people don’t ache deep in their bones after washing the dishes for fifteen minutes. The validation felt incredible. At first.

A few months and her new lease on life came to an abrupt end. The joy of a diagnosis can only outweigh the reality of a diagnosis for so long. It all crashed at once one December week. Her body working overtime to compensate for the cold, leaving her at the end of the day exhausted and with aching joints. Now that the rest of her body was under control she finally had time to address her mental health. The new medication bestowed her with a slightly elevated mood and intense nausea and even worse headaches. Then on a particularly busy day she forgot the stool softener, effectively ruining her digestion for at least a week. It was like someone pushed her into a time machine.

So what’s going on?

She tells her favorite physical therapist everything. Each sentence comes out angrier than the last. The sympathy in his eyes as he nods along makes up for every uncaring doctor she’s ever met. Out of breath and energy, she ends her rant.

I thought I was finally out of the woods.

He stumbles over his words not for a lack of them, but because there are too many he wants to say. He explains that what is wrong with her is a chronic illness. Incurable. Part of her life forever, whether she likes it or not. The revelation has a scream bubbling up inside of her. She holds it in because he’s the only doctor who doesn’t deserve to hear it. All this pain and suffering just to be told it will never end. He gently corrects her in a way that will stay with her the rest of her life.

With chronic illness you’ll never be out of the woods, but you’ll only find clearings if you keep walking.