My Records, My Life, My Med.
How my chronic illness journey lead me to a medical record solution.
Have you ever taken a red eye flight after pulling an all nighter the day before? Imagine how you felt when you got off the plane, the aching joints and muscles and pure exhaustion. Too exhausted to eat even after swearing you were starving. That is the closest most people will ever get to the feeling of chronic fatigue. I am grateful for that. Unfortunately for me, I’m not most people, and one day, an overachieving sophomore at Wellesley College excited for her first round of tech interviews, I woke up feeling that way. Then again the next day. And again. And again. And again.
I tried to go to be earlier. I tried to push through it only to find myself napping through my lunch break. I didn’t tell anyone, fearing they would blame my packed schedule when I knew that it was not any more than my normal capacity. I knew this wasn’t me.
I wasn’t myself. I refused to be anyone else.
Tedium lead to despair that led to depression. How could I possibly live the life I wanted when I couldn’t even stay awake? I accepted a summer internship at Google fully aware that the person whose resume they accepted was slowly being eaten away. I couldn’t face the eventuality of my discovery. I would attend my classes, as energetic and participatory as ever, only to collapse in the bathroom, paralyzed and spasming from the overexertion.
Eventually, after asking for guidance counselor for months, I was booked into a session with the school psychologist. She sent me to hospital for suicidal ideation. Once there, I was told I had major depressive disorder. That my exhaustion was a product of my depression, and that with treatment, a drug called Lexapro, I would start to feel myself again.
I believed the doctors. I started the medication and tried to reassure myself with the knowledge that it would take time for it to accumulate in my system. My mood improved slowly, and I finished my semester without a dent in my 4.0 GPA. But I still felt tired. I was seeing a psychiatrist now. First they prescribed Seroquel, saying that the Lexapro wasn’t having a full effect. Then they pulled that, saying perhaps the Seroquel itself was contributing to my fatigue. We tried this and that, pushing levers here and there. Eventually we settled on a stimulant that seemed to help, despite it being off label.
As this all happened throughout the second semester of my sophmore year, I made the decision to move to Australia to be with my boyfriend and main support throughout this all. We had been best friends for years and I had heard that Australia’s medical system and the accessibility of Monash University would make my life easier abroad. Following my internship at Google, I would take a semester off and then start a year of study abroad at Monash. I had been lucky enough not to lose any credits throughout the ordeal and to have enough AP credits to return to Wellesley for one final semester and then graduate.
The summer went wonderfully. Between the stimulant, a supportive work environment, and being able to coast on finally working in software, a hobby of mine since I was 10, I had an incredible work experience. I even got to direct the Seattle office’s accapella group! Despite all to good spirits, I found myself exhausted on the weekends, and just didn’t understand why. After all, I was living my dream, what was there to be depressed about?
When I moved to Australia a combination of a more believing psychiatrist, good GP, and increased physical symptoms revealed the reason why. Perhaps I did have depression, but the cause of my fatigue was something else, something physical. Over the course of 6 months I collected piles of paperwork, MRI’s, CT, blood work and specialists galore. I was astonished by the fact that everything from test results to bills to scans was still on paper. Every doctor I visited spent most of the visit in front of a computer, making notes, recording details, looking up results, yet on my end, it was all relegated to an ever increasing paper Everest.
Every doctor I visited spent most of the visit in front of a computer, making notes, recording details, looking up results, yet on my end, it was all relegated to an ever increasing paper Everest.
I began attempting to scan documents as much as possible. A child of silicon valley in 1999, I wasn’t accustomed to having important pieces of paper. Much less piles of them. But I was fatigued, increasingly prone to episodes of confusion, and often in far too much pain during doctors appointments to take note of what was happening, much less deal with paperwork. My childhood medical records and details from the US never made the trip at all, relayed only me and my mothers recollections of my struggles with TMJ and endless colds and flu’s in my Junior and Senior years of High School.
Frustrated by the endless dead-ends of the diagnostic process, I found myself repeatedly declaring “God damn it! I could write the software to keep track of this sh*t myself. Why can’t I just download something to take care of this already?”
“God damn it! I could write the software to keep track of this sh*t myself. Why can’t I just download something to take care of this already?”
Months of struggle, and a specialist visit halfway across the world later, I was finally on the road to recovery. I started to think I owed it to myself to help my prior self. Even with a preliminary diagnosis of Behcet’s disease, migraines and fibromyalgia, I still had piles of doctors appointments to get through, every one starting with a long discussion of history and records. There was no standard much less highly successful treatment to recommend. It would me months more of trial and error to resume something of a normal life. I decided to make use of my Usability course in a way that might be just a bit more beneficial than a degree credit. I put together a design portfolio for a medical records application MyMed and committed to making it a reality.
So here I am. Trying to make this terrible twist of fate worth something. Trying to make it a stroke of luck that this time, this terrible curse of chronic illness hit someone whose going to fight back, not just against the disease, but against a medical system that does center records around the people who they most affect: the patients they pertain to. Fighting for patients with rare diseases, patients who need to be their own case study because every case is different and no one knows why. With COVID creating a new wave of “long-haulers” people who are only just starting a journey that could last years, the need to medical records that patients own, that patients take with them, and that patients can study, control, and bring to the attention of the doctors they believe can help them is essential.
No doctor will ever know a patients case as well as the person living it.
No doctor will ever know a patients case as well as the person living it. There are symptoms of my illness I will probably never think to mention to a doctor because they just seem irrelevant. It is only with control and access to my own medical records, the ability to take it with me as I live my life, and the ability to see the trends beyond a few consultations or a half hour appointment that I will be able to make a life that works for me. If MyMed allows just one other person to have that ability, if MyMed gives me that ability, it will be worth it. I thank my incredible team of friends in the tech and disability community helping me to make this dream a reality. I thank the Behcet’s disease community to reaching out to make this application work for all cases, not just my own. And perhaps, in a twisted sort of way, I thank my disease for giving my skills in technology a purpose far more important than video games and websites.
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To check out our prototype, join our mailing list, work with us, or learn more about the MyMed open source project, go to www.mymed.tech