Three years ago as a freshman, Hazel Macke’s (12) school day started out like any other: they woke up at 7:20 a.m., ate breakfast, drove to school with their mom, and attended their first three periods. Throughout it all, Macke felt normal. 

It wasn’t until fourth period while running the mile in PE class, that Macke’s day, and life, would begin to change. 

Not even one lap in, Macke was gasping for air. 

“It was like my whole body just started to shut down,” they said. “I could feel my chest caving in, and after that, I could no longer feel my legs.” 

From that point forward, Macke’s PE experience was one of extreme pain and exhaustion—almost every day after class, they would enter the locker room and vomit, sometimes even losing consciousness. 

Concerned for their health, Macke brought their symptoms to their family that they were living with at the time. Instead of being met with equal concern, Macke says their family dismissed their symptoms as being weight-related. 

“I’ve been a bit of a bigger person for my entire life just because of a bunch of genetic stuff,” they said. “So it was a lot of ‘if you eat better, if you exercise more, it’ll go away’ and ‘no, this is your fault” rather than, ‘there is an actual problem.’”

Macke, however, knew that their pain was real and possibly part of a much bigger issue. But because of their family’s general distrust of the medical care system, as well as not believing the validity of their symptoms, Macke wasn’t able to see a doctor for two years until moving from Washington State to San Diego in 2020. In the two years between the onset of their symptoms and when they first received medical care, Macke’s pain only became more frequent. 

“A lot of times when I’d just be walking with my friends, I would get so winded that I was no longer able to speak,” Macke said. “I noticed that stress began to trigger my pain as well. The more stressed out I got, the worse my symptoms would get.”  

Eventually, Macke lost the ability to run, to walk long distances, and to sleep comfortably through the night, among other things. However, after moving to San Diego to live with their father, Macke was finally able to see a primary care doctor to try and identify the cause of their symptoms before ruling out multiple diagnoses such as chronic fatigue syndrome, regional pain disorder, arthritis, and narcolepsy. While Macke said that the experiences they’ve had with their current primary care doctor have only been positive, they said they’ve also had many negative experiences with the various doctors they’ve seen while visiting urgent care. Like their family previously had, these doctors often passed Macke’s symptoms off as a weight-related issue, telling them that exercise would do the trick. 

“The comments about my weight and diet have been made by various doctors that had been around me for a max of five minutes before coming to that conclusion,” Macke said. “It felt very isolating because at that point, the doctors had told me what the problem was, and I wasn’t doing the things that they said were supposed to fix it. So I began to think, ‘it must be my fault because I’m not doing these things’ but then it would loop back to ‘but wait, I can’t do these things, so where do I go from here?’”  

However, after only two months of exploring their symptoms with their primary care doctor, Macke stumbled across a Facebook post that would finally lead them to an answer. The post, made by Macke’s aunt who they previously had very limited contact with, mentioned a genetic condition that she had apparently suffered from for years. Intrigued by the post, Macke went to Google and typed the condition into the search bar. When the search results popped up on Macke’s phone screen, it was like a lightbulb went off in their head, they said. 

“I was like, ‘wow, this seems like what I have to a tee,’” they said. “The symptoms I found were the exact symptoms I had been experiencing for years.” 

According to the CDC, the condition, called Fibromyalgia, is a chronic neurological disease that causes the body to perceive pain abnormally and typically to a greater magnitude. After bringing their new knowledge of Fibromyalgia in their family’s medical history to her primary care doctor, the doctor immediately began running blood work, performing X-rays, and monitoring Macke’s symptoms over the course of the next year. Finally, in early January of this year, Macke was officially diagnosed with Fibromyalgia. 

“Finally getting that diagnosis gave me a huge sense of peace,” they said. “Because there were so many years of thinking ‘well I guess I’m crazy, I guess this is my fault,’ it really did release a lot of internalized guilt from blaming myself for my own condition.” 

Although there is currently no known cure for Fibromyalgia, since receiving their diagnosis, Macke has been in and out of physical therapy and has been prescribed Amitriptyline—a nerve-pain and sleep medication. 

According to Macke, while the medication has helped them maintain more restful sleep, which had previously been consistently interrupted, Macke still experiences chronic pain on a regular basis. Especially while attending a school as competitive and rigorous as Westview, Macke said the pain can be difficult to manage. 

“It’s a nerve disorder, so any stress that you take into your body, whether it be physical or emotional, is going to cause your body to react rather than just your brain,” Macke said. “Westview is already an incredibly difficult school for able-bodied students, so to have that extra layer of disability, fatigue, and exhaustion 24/7 at a place like Westview, can be ridiculously hard.” 

Although Macke is likely going to be navigating pain management for the rest of their life, they said they’ve gotten better at listening to their body and responding with what it needs to prevent flare-ups. 

“My doctor and I talked a lot about taking a proactive approach to treatment rather than just a reactive one,” they said. “So that usually means using my wheelchair more even when I don’t think I need it, or just taking it slow with myself and allowing myself to be tired when I need to take naps at odd hours of the day.” 

Although Macke has lost a lot to chronic pain, they said they try to focus on what they’ve gained since that day while running the mile in freshman PE—a greater perspective on how to treat others, as well as themself. 

“You would never look at me unless I was in my wheelchair and immediately think that I was disabled,” they said. “Because of that, I now know you have to be gentle with everyone you come across, because you never know what people are dealing with. And it took very specific, very rare people in my life to offer me that amount of kindness, so now I know I need to be able to offer it to myself because others aren’t always going to be there to give it to me.”