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It was a gloomy day, and Phil could feel it in his bones – literally – that it was going to storm soon, if it wasn’t already, he hadn’t looked out the window to check. He groaned as he pushed himself upright and his knees ached with every movement. It was difficult to describe the feeling. The only way he knew how to explain it was that it felt like there was an air bubble inside his joints and despite the lack of temperature, the first word that came to mind was that it was cold. It felt like this weird air bubble, “cold” feeling had roots beneath his kneecap and was trying desperately to spread across his legs, yet they could never escape from where it spawned.
Some people would chalk it up to the fact that Phil was nearly 40 years old, since joint pains are often a part of aging, but this wasn’t new. He’s been dealing with these problems since he was in Year 6 when he twisted his left ankle while trying to do parkour with his friends and then a month later ended up with a fracture in his femur on the same leg. The cause of the fracture was still a mystery but he assumed it was connected to the time he twisted his ankle. Ever since then, he’d experienced pain in his knees and ankles, and even sometimes hips at least once a day.
He’d researched online what these symptoms could mean. Constant pain in his knees, joints dislocating for no reason that he was aware of. Doctors had told him it wasn’t possible and yet, they could never explain to him why his this happened. His wrist could dislocate, despite not using it and then hurt for an entire week afterwards Other symptoms included sensitive skin, frequent dehydration, migraines and so forth. Every time he listed his symptoms in a google search, he’d find results ranging from the idea that he could have cancer, to being convinced he’s developed early onset arthritis, but every time he went to the doctor, describing his problems, they’d never found any reason why he wasn’t in perfect health. He wished he could project his pain onto these doctors so that they would finally take him seriously, and that the dramatic accusations would be dismissed.
“Rise and shine sleepyhead,” Dan said in a gentle voice, flicking the light switch and temporarily blinding Phil with the unexpected change in lighting. “It’s storming today. How are you feeling?”
“Like my knees are going to fall off,” Phil answered, flopping back down on his pillows. Dan was very observant, as any good partner should be. He’d picked up on the ways the weather affected Phil’s joints from the moment they’d first been caught in a storm together. Dan had researched with Phil, and even if they’d yet to find a diagnosis for Phil’s issues, he’d figured out some of the correlations between the issues and outside factors, as well as solutions, even if they were temporary. He’d found out that the change in the air pressure during a storm affected the pressure in Phil’s joints, causing him a lot of pain, and the best way to combat it was for Phil to eat salty foods and drink lots of water, as well as resting of course.
Dan sighed knowingly, “I brought you some bacon, I kinda burnt some of it but I know you like it to be crispier.” He set a plate of bacon on the night stand next to Phil, with a giant water bottle filled to the brim right next to it. Phil, being the clumsy guy he was, had knocked his cup of water off the table multiple times before, so Dan had compensated by getting him a giant water bottle with a lid and a straw.
Phil sat back up, knowing it’s a choking hazard to eat food while lying down, and took a bite of the bacon. It crunched loudly in between his teeth. Dan was right, it was slightly burnt. The charred flavor lingered behind after swallowing each bite so Phil washed it away with large gulps of water. It was worth it though, because a few moments later, after he’d finished eating, Phil began to feel better. His knees still hurt, but it was tolerable enough for him to get out of bed.
“Your appointment is today, just so you know,” Dan reminded Phil as he swung his legs over the edge of the bed and stood up to get changed, “It’s a 20 minute drive so we’ll probably want to get an Uber at 2:30 so that we can get there a bit early.”
Phil nodded, signaling that he’d heard Dan and checked the time. It was 2:00 so he had 30 minutes to get ready. Dan left and closed the door behind him, leaving Phil alone in the room to get changed.
Phil’s leg bounced rapidly with his anticipation as he and Dan sat in the waiting room. He’d scheduled an appointment with a private doctor who was going to evaluate his symptoms, hoping the money he’d spent wouldn’t go to waste. After years of being ignored, brushed off, and not taken seriously, he’d been introduced to a doctor who’d suggested he get tested for something called Ehlers-Danlos Syndrome. Specifically the hypermobile subtype.. Neither Dan nor Phil had ever heard of it before, and when they’d looked it up, it seemed to be very uncommon. However, after researching the basic facts, Phil’s symptoms seemed to match up with almost all of the ones listed.
He was excited to finally have an answer to his problems, something explaining how his body worked and why it worked that way, but he was nervous for what it would mean in the future. He was also nervous that he’d yet again get told that there was nothing wrong with him, and he was in fact just being dramatic despite his and Dan’s research seemingly showing that he did have this disorder.
“Philip Lester?” a melodic voice called from the doorway to his left. Phil’s head snapped to the direction of the voice and he stood up quickly. The voice belonged to a short and stout woman, with tan skin and dark brown hair. She smiled warmly at Phil, adjusting her white coat over her shoulders and tucking her clipboard under her arm. “I’m Dr. Edwards, I hope I will be useful to you today.” She stuck out her hand and Phil shook it.
Dan followed behind Phil and Dr. Edwards as they did the regular doctor things, checking for height, weight and blood pressure, before they were led into the Doctor’s room. This doctor’s office was different from what he was used to, most of the time they felt cold and sterile, but Dr. Edward’s room was different. It was covered in informational posters about EDS, and other disorders Phil had only heard of when they were vaguely mentioned as comorbid to EDS. There were also posters of Zebras with quotes above them, supposedly related to EDS.
Dan nudged Phil and snickered, pointing at the one of the zebras, “Zee brah” he said loudly in a mock-American accent. Phil snorted and slapped his arm, shifting his focus from poster to poster.
As he looked around, one of the smaller posters caught Phil’s eye. It said “I’m not faking being sick, I’m faking being okay.” Despite the corniness of it, Phil felt like he could relate. It was impossible to count the amount of times he had to pretend he was fine, despite his knees flaring up in immense pain, because he knew no one would believe him. Being at things like VidCon and meet & greets or any events that included standing for long periods of time with nowhere to sit down was always dreadful for him. Dan was often mindful of these problems and did whatever he could to support Phil, but when combined with the craziness of the early days of their fandom, it was hard to lean on Dan physically, when he needed it, without people trying to pick apart the ways it could prove the existence of phan.
“Alright, Phil, why don’t you describe some of the symptoms that lead you to believe you could have EDS,” Dr. Edwards said, sitting down behind her computer, attached to a mechanical arm that was anchored to the wall. She lowered to her level as she sat down on her stool and scooted close to the chair where Phil sat. Dan interlocked his fingers with Phil’s and gave him a comforting squeeze as if to say, “we’ll finally figure this out, she’ll have the answers.”
Phil cleared his throat, “Okay, so, I’ve experienced a lot of pain in my knees since like, Year 6 after I’d fractured my femur. Even after it’d healed. It was like that fracture was a trigger for my problems or something. Whenever it storms my knees hurt a lot more than usual and I get headaches a lot and I feel dehydrated almost all the time. Sometimes my left wrist dislocates and I have no idea why because I barely use it since I’m right-handed,” Phil continued on, sloppily explaining all the symptoms he’d experienced that could be related to EDS, with Dr. Edwards occasionally typing notes into her computer.
“Thank you for explaining,” Dr. Edwards said when Phil’s list of symptoms had concluded, “Now, I have criteria to follow for the diagnosis, as you know, and we’ll have to do some tests that might seem a bit weird.”
Phil glanced back at Dan who nodded encouragingly, tilting his head towards the doctor, “Alright, what do you need me to do?”
“First, I'll need you to demonstrate some things for me, then I’ll ask you a couple of questions, though you’ve already answered most of them for me, and then I’ll have to take a sample of your blood. I won’t be able to diagnose you for certain until after we get results of your blood tests, but when we’re finished with what we can do immediately, I’ll tell you what diagnosis I’m leaning towards. After this we can schedule a follow up appointment, that will only be two weeks away, which is when I can give you the official diagnosis.” Phil nodded along as Dr. Edwards explained the criteria of the diagnosis. “Alright, so first, could you please extend your arm for me as far as you can.” Phil complied and Dr. Edwards brought up a protractor to his arm, marking down the measurement.
Phil remembered when he was younger, he was always freaking his friends out when he showed them how far his elbows could extend. He always found it funny how the teenage girls in his class would make a disgusted face and scream “ewww!” at the fact that his elbow extended farther past than where it was supposed to. Instead of making a straight line, his arm made an obtuse angle in the wrong direction. No one else in his friend group could extend their arms past a straight line, but mom and brother could extend their arms the same way, just not as far.
“Next,” Dr. Edwards continued after scribbling down her notes, "could you put your hand flat on the table for me?” Phil followed her instructions, pulling his pinky upwards just like he was told to do, and Dr. Edwards measured it again. There were a few more things he had to do before he was allowed to sit back down. They included locking his knees (apparently he’d been doing this without knowing for as long as he could stand), which was apparently a large contributor to the knee pain he had and could make him pass out if he stood that way for too long, which explained a lot. He also had to bring his thumb down against his wrist and he was surprised to find out that it was something he could do.). Lastly, he had to put his palms flat on the ground without bending his knees.
He recalled being in elementary school during PE when they were doing warm up stretches. One of their many stretches included bending down to touch their toes without bending their knees. Some people were able to reach their toes, and others could barely bend far enough to get their hands past their knees, but Phil was able to put his palms flat on the ground. It always made his knees hurt, which he now learned was because they were hyper extending when he did it, but he felt proud of himself for being able to do something else that no one else around him could do, especially when his classmates became impressed or jealous of him.
He was then asked about his skin. It didn’t make much sense to him how his skin was connected to all of this, but he went along with it anyway. Dan butted in a couple times to explain how Phil’s skin was freakishly soft, like a princess who never did any manual labor ever. Both of them recalled the random times when mysterious cuts and bruises Phil would end up with, and when they did expect him to get a bruise, like one time when he banged his knee really hard on the edge of their table, it never appeared. He also learned that his skin was stretchier than it was supposed to be. It wasn’t supposed to be able to be pulled up as far as it did when he pinched the skin on the top of his hand.
“Alright, now we’ve done all of these tests, it’s time to get your blood drawn.” Dr. Edwards said, “I’ll go check to see if the POCT machine is available, you can wait here.”
A few moments later, Dr. Edwards returned and beckoned for Phil to follow her. He was sat in a cushioned chair as Dr. Edwards got out a fresh needle, wiped it down, and then rubbed a damp towel on his forearm, right by the vein that the blood would be drawn from. Phil felt his heart rate increasing as Dr. Edwards got everything ready. He'd always been nervous about needles, but he knew that getting too tense would make everything worse, so he reached with his free hand for Dan’s. Dan didn’t need Phil to say anything, he was already rubbing circles on the back of Phil’s hand and whispering soothing words into Phil’s ear until the procedure was over. Once his blood was drawn, he was led to the counter to schedule his next appointment.
“You did a great job, Phil,” Dr. Edwards said after he’d finalized the schedule, making sure to put it in his and Dan’s shared calendar. “Based on what you told me today, I can say with almost certainty that you do have hyper mobile Ehlers Danlos Syndrome. The next time we meet I can give you the official documents of your diagnosis and this will be put on your medical record. We can also discuss helpful methods for dealing with your symptoms and I can explain more to you about EDS.”
Two weeks passed uneventfully before Phil was back in Dr. Edward’s office. Dan was sat next to him again, this time with a notepad and pen in hand, poised in preparation as if he was about to take a timed exam.
“Hello, Phil. Dan,” Dr. Edwards greeted each of them shaking their hands individually, “Our results are in.”
Spoiler alert: Phil had it. He was officially diagnosed with hEDS. Upon hearing the news, he breathed a sigh of relief. He finally had something to explain his issues and he no longer felt like he was over exaggerating his problems. Now when he was at regular doctors appointments, he could quickly shut them up, pointing at his diagnosis. They could no longer tell him that there was nothing wrong with him, finally taking him seriously.
“Now I’m sure you’re wondering, ‘where do we go from here?’ so I have some suggestions. Firstly: physical therapy can be very helpful. You can strengthen the muscles in your joints and train them to move properly, especially with the way you stand with locked knees. You can also pay attention to your diet. Salty foods are good, but you also want foods that are high in protein. I’m not going to try and tell you to go on a super strict diet, but try your best to eat more greens and less junk food.”
Dr. Edwards handed Phil different pamphlets full of information about EDS itself, comorbid disorders to look into, and contacts for different physical therapy clinics that he could make appointments at. Dan was slouched next to Phil, furiously scribbling notes onto the lined paper on his lap.
“I’d also suggest finding braces for your knees that you can wear when you have to do a lot of standing or walking around, as well as arch supports for your shoes since I noticed you have flat feet,” She handed Phil more pamphlets showing the best kinds of braces and shoe inserts. “I don’t want you to spend more money than you have to, and I want to let you know that all of this is optional, but the more suggestions you take, the better you’ll feel.” Phil took all of the pamphlets and info sheets and tucked them into Dan’s bag that was sitting on the floor in between them.
Dan and Phil walked away from the appointment with loads of new information. Phil had learned that EDS is a connective tissue disorder. Connective tissue is everywhere in the human body. In legs, arms, and even in the head, which explained Phil’s headaches, like when he wore the wrong shoes one day and it made his knees hurt so bad that the throbbing pain spread all the way to his head. The connective tissue is what holds muscles to bones, skin to muscles, and bones to each other. For people with EDS, it’s formed too loosely. Because of this loose formation, Phil’s joints have to work extra hard to move, causing him to become fatigued and dehydrated much faster than most people, as well as causing a lot of joint pain.
Phil may not know everything about EDS yet, he still had lots to learn, but it felt refreshing to finally have an explanation for how his body works, why it works that way, and how to deal with it. He could even tell his family about this, and encourage them to get a diagnosis, after the many times his mom had said that there was nothing wrong with him since she and his brother had the same symptoms, so it must be normal.
“Should we make a YouTube video about this?” Phil asked Dan as he bucked himself in at the back of the Uber, earning a confused look from the driver’s reflection in the rearview mirror.
Dan chuckled and shook his head. Of course Phil’s first reaction was to make a YouTube video about it. “That doesn’t sound like a bad idea, especially because you could help spread awareness and maybe encourage other people to look into getting diagnosed, but I think we should look into physical therapy and knee braces first. Then, we can start writing a script for a YouTube video."