In November of 1993, I fell ill with mysterious symptoms. Usually bubbly and energetic, I became incredibly fatigued and demure. I was dealing with a lot of joint pain, swelling, and fevers. On top of that, I had a salmon-colored itchy rash that came around at night and disappeared in the morning, making it hard for doctors to evaluate. This rash itched so much that I hardly slept, spending time itching these blotches in my sleep.
Once we engaged with the health care system, the misdiagnoses just kept coming. I was evaluated for various allergies and chemical sensitivities. Just to be safe, we switched up all of our soaps and shampoos for a while. Eventually, as the list of possible diagnoses dwindled, I was diagnosed with leukemia and given six weeks to live right before my sixth birthday. My family spent time together on the Oregon coast for my birthday, and it finally felt like the chaos stopped for a few days. For the first time in six months, I mostly got to just be a kid. I was honestly ready to die. I had made peace with that, as much as you can as a small child. There was just a small problem.
Leukemia didn’t match most of my labs or symptoms.
My mom, convinced that this wasn’t leukemia, did what she was good at doing – rebelling. For months, we spent time at the University of Oregon’s Knight Library poring through medical textbooks. We stumbled upon Systemic Juvenile Rheumatoid (now Idiopathic) Arthritis, also known as juvenile-onset Still’s Disease. It explained every symptom perfectly. We spent the next few weeks collecting our evidence – video footage and photos of my rash at night, diagrams where we charted the rash and joint issues morning and night, and figuring out how fatigued I was. The next time we saw the family doctor, we came with a binder of information. He agreed it was absolutely worth pursuing and put in a referral to a pediatric rheumatologist, who quickly agreed.
Unfortunately for me, my mother dealt with discovering my diagnosis in a poor way and subsequently pulled me out of healthcare settings by the time I was seven. I didn’t see another medical provider until I turned 21 and had my own insurance. In mid-2015, I finally got on a treatment specifically for my SJIA, which has been under control with minor flares since then.
By 2016, I was struggling again in different ways. My left shoulder would continue to act up, despite physical therapy. I began to have episodes of feeling as though I was about to faint. I stopped being able to take medications with water, having to opt for thicker liquids like soda. While in the middle of my master’s program in health care administration, I knew this was more than the stress of graduate school.
Before going to doctors, I wanted to have an idea of what could be the problem and collect evidence. I wanted to bring back what we had done when I was a child. I bought various textbooks to research and learn about the different systems in the body on a deeper level, including immunology, neurology, and physiology. I no longer read journal articles for fun, but to find answers.
I did what I knew Dr. House would do – I bought a whiteboard and wrote up my differential diagnoses list. There was a corner for the labs I had in mind to get done and another for the things I needed to track, like heart rate and blood pressure. For a while, my life was going to physical therapy and other appointments, getting groceries, writing part-time, and solving my medical mysteries.
Various providers I saw helped me talk through the data I collected and get tests to evaluate for the plausible possible diagnoses. I had MRIs of my entire spine, nerve conduction tests, and even a 48-hour heart monitor. These tests only ruled out conditions. Thankfully, even without big answers, some symptoms were more clearly identified. We discovered that I had a mild case of gastroparesis, a hiatal hernia, and trouble swallowing.
Funny enough, the three strongest initial contenders I had down for diagnoses ended up being confirmed. It wasn’t until early 2019 when I received diagnoses and began treatment for Mast Cell Activation Syndrome (MCAS), Post Orthostatic Tachycardia Syndrome (POTS), and generalized hypermobility. I have to take multiple medications to regulate my immune system’s response to normal things like scents due to the MCAS. For POTS, I have had to increase both my liquid and salt consumption in addition to wearing compression socks when I feel faint. I went through intense physical therapy for over a year to learn how to move all over again, this time in ways that protect my body and work with my hypermobility. Thankfully, all three conditions are fairly under control now.
How can we do better by patients
As someone who has studied how positive changes in healthcare have improved care and cost by improving patient engagement, one of my least favorite sayings is the one along the lines of “Don’t mistake 10 minutes of internet searching for a medical degree.” While I understand the sentiment somewhat, it does a major disservice to every single patient that I know. Gone is the time of mocking patients trying to find answers online, especially with a lack of access to healthcare.
Patients have so much more technology at our fingertips now, allowing us to be active participants in our health at deeper levels than ever before. This can lead to all sorts of positive results when we find providers who will listen and evaluate the evidence with us. I’ve seen providers who wouldn’t even look at charts of my pain that I created myself in a spreadsheet. I put in a lot of work on collecting my own data, and it’s demoralizing when providers won’t even look at it. The only reason I’ve ever fired doctors has been when they’ve spent time listening to me to rebuke what I’ve said as opposed to listening to understand and have a conversation.
From research, we know that healthcare costs and emergency room usage both go down when patients are engaged in their own care. We also know that a patient’s overall health improves because they bring up issues sooner and feel more ownership over their health. In a time when health systems are overburdened and understaffed, why wouldn’t we want that?