Josie's Journey

Instant Alopecia

Josie sat in the doctor's office, her legs anxiously shaking. Dr. Richards wanted to see her again to check on the state of her epilepsy, and to try to manage her POTS and gastroparesis better.

The nurse had already come by to check Josie's vitals and such. Her blood pressure was low and her pulse was high - that was normal for Josie.

The doctor knocked on the door, then came in. "Hello again, miss Josie. How are you doing?"

"I'm... normal," she replied with a sigh. "I'm still having problems with seizures and sometimes passing out. I've had a lot of joint pain recently and it feels like sometimes they pop out of place a little bit, but now they also dislocate. I've had a few shoulder and finger dislocations that the doctor on the unit has had to put back. That hurts a lot. And I've had a lot of other pain too, just in my muscles and getting bad headaches and stuff, all over pain really. Oh, and even though I'm running my feeds the best I can and getting some help from the eating disorder groups, I guess I'm malnourished or something because I'm still losing chunks of my hair."

"Well," he said, putting notes into the computer. "We can adjust your epilepsy medications and see if we can keep you seizure-free a bit longer this time. I'd suggest wearing compression stockings to help manage your POTS symptoms, and maybe we can add more fluids and electrolytes to run through your G-tube."

"Will that help?" Josie asked hopefully.

"Lots of patients have found relief with compression gear," the doctor replied. "About your hair loss... you said it comes out in chunks?"

"Yes, I have a few small bald spots by now, the worst is at my hairline and on the back..." Josie was a bit embarrassed about it - her hair was her best feature and she never wanted to lose it.

"Hair loss from malnutrition, like you'd see with anorexia or gastroparesis, is usually very minimal. It shouldn't be causing any noticeable bald spots at all." Dr. Richards stood up. "I'm going to get one of my colleagues. There might be... another explanation for your hair loss."

— — —

After almost an hour of waiting (luckily she'd brought a puzzle book), Dr. Richards came back in. He had a woman with him, a short black lady with graying hair.

"I'm Dr. Akenzua," she said.

"She's a dermatologist," Dr. Richards explained to Josie. "She's here to look at your scalp and see if she can figure out your diagnosis."

"O-oh, okay," she murmured. Josie sat still, feeling the other doctor's hands running over her scalp and through her hair. The examination felt strange, but it didn't hurt or anything.

"I'm going to examine a sample of your hair," Dr. Akenzua told her. "That should give me all the information I need, as well as looking at your last blood test results."

The lady left the room. Dr. Richards turned to Josie; she could see something was pulled up on the computer but she couldn't read what it was.

"Josie, I'm going to write you a referral to a special clinic," he said. "It only recently opened up. It's affiliated with one of the best hospitals in the area."

"What clinic? For what?" Josie was a bit anxious, but kind of excited.

"It's called the Chicago EDS Clinic." The doctor handed a brochure to Josie, who handed it to the nurse that accompanied her from the psychiatric hospital. "They have doctors there who specialize in dysautonomia and gastrointestinal motility disorders. However, I especially want you to see one of their geneticists."

"Why do I need to see a geneticist? I thought we'd figured everything out!" She was starting to panic a little bit, but she had to force herself to calm down when she saw the nurse reaching for his pager... he would call a team to remove her from the appointment and take her back and to isolation. Josie had seen it happen before.

"I strongly suspect you might have a condition called Ehlers-Danlos syndrome," Dr. Richards told her. "Among many others, its symptoms are widespread chronic pain and joint dislocations. It's also more common in patients who have dysautonomia and motility disorders."

"Oh." She didn't know what to say.

"The team of doctors you'll work with there will make a diagnosis and they'll be able to come up with an excellent care plan."

Dr. Akenzua came back into the room. "Well Josie, we have an answer. You have alopecia areata."

— — —

The nurse walked Josie back into the ward. She was tearing up a bit still.

Her hair was the one thing she liked about her appearance. Wavy, shiny, and a beautiful color... and it was falling out. The doctor said there was no real way of knowing if her hair would fall out completely, or if it would stop, or if it could even start growing back. Josie prayed it would grow back, but it was hard not to listen to the anxious thoughts telling her that it would all fall out.

"Hey, what's wrong?" Leo asked. He'd walked into the room to see how Josie was doing, and was shocked to see her crying into a pillow.

"Th-they said my hair is gonna keep falling out," she whimpered.

"Aw, hon..." He sat down and patted her back comfortingly. "Hey, when you're feelin' up to it, there's someone it might help you to talk to?"

"Thank you." Josie sniffed back tears. About ten minutes later, she wiped her face clean, and went into the common room. She saw Leo sitting by another patient; he waved Josie over when he saw her.

"Hey, you talked to Holland before?" he asked. "They've been so nice to me, and I think they can give you some good advice."

"Hey," she said shyly, sitting down carefully in a chair next to Holland. "Sorry if this is awkward, it was all Leo's idea..."

"Oh, don't worry," they replied. Josie looked over at the drawing they were working on in their sketchbook.

"That's a really cool drawing! You put so much detail in it," she told them.

"Oh, thank you! It's a horned lizard." Holland inked in some more details, then put the pen down. "So, Leo said you're losing your hair?"

"Yeah," she sighed. "The doctor told me I have alopecia. Do you, uh, do you also have it? Your hair looks totally normal..."

Holland took a handful of their wavy hickory-brown hair and lifted it out of the way, revealing bald patches behind their ear and along the hairline.

"Oh," Josie said quietly. "Sorry, I-"

"Don't worry about it." They let their hair fall back into place, then pulled some sort of a stim toy out from their sweater pocket. "My hair is really thick, so most people don't notice."

"So, is it alopecia?"

"No, I have trichotillomania," they replied. "I did this myself, I compulsively pull it out. It's not noticeable on my scalp, but I pull my eyebrows and eyelashes too sometimes."

"Wow. I didn't even know that was a thing." Josie paused. "Do people ever stare, or make fun of you?"

"Some people do, but they're assholes," Holland said and laughed a bit.

"Does it hurt?" she asked.

"When you pull it out, yeah. But otherwise no."

"How do... can you make it grow back faster?"

"I mean..." They sighed. "There are some products, and some people say you can use herbs or supplements. But I've never bothered with it. If you want to, that's okay."

"Well, I don't want people to see me go bald," she replied quietly. "I just want to have normal hair. Nothing about me is normal, I wish I could just have my hair!"

"I get it." Holland smiled sympathetically. "You can always wear hats or scarves, or maybe you can even start wearing wigs."

"Wigs are kind of cool," Josie said, smiling back. "I've always wondered what I'd look like with blue hair..."