"When you hear hoofbeats, think horses, not zebras."
Every medical student learns it again and again. Every physician regards it as the highest truth. It is a statement that exists within the very fabric of medicine.
Essentially, it urges doctors to look for the simplest causes of disease. Sometimes, this method works well. But in a lot of cases, it is a complete failure.
My Undiagnosed Life
I, like so many others, am a medical zebra. I have stripes, and no one cares enough to look for them. I have first-hand experience with the devastating destruction of an undiagnosed disease. You cannot prepare for it, and you cannot fight it. It moves swiftly and silently, invisible to everyone but you. It will stop at nothing to destroy you, and it leaves only sorrow in its wake.
There was once a time when I had a plan for myself. I had hopes, dreams, and an iron will. I was going to be fiercely independent, and everything was going to be okay. I dreamed of success. I still do.
But my undiagnosed illness has stolen everything from me at every turn.
School was difficult, and I almost didn't graduate from high school. Driving was futile, college was futile, working was futile, everything was a failure. All I could do was watch my life crumble at my swollen feet. I wasn't living at all. I was merely existing.
To make matters worse, doctors, family members and friends were being judgmental and inflammatory. It was so . . . invalidating. I felt so abandoned and so betrayed. This was a time when I needed people the most. Instead of support, I encountered judgment and ridicule:
- "It's mind over matter!" screamed my mother.
- "You just need to learn to drive," said my father.
- "Why don't you just get a job?" demanded my father, on another occasion.
- "You just need to quit sleeping so much," said one aunt.
- "You just need to stop eating so many carbs," insisted another aunt.
- "You just need to exercise," insisted my uncle. "Start off slowly and then increase your distance."
- "You're just a fat, lazy bitch!" yelled my mother's boyfriend.
- "It's all in your head," said one friend repeatedly.
- "You just need to get out more," offered another friend.
One evening, after drinking a glass or orange juice, I spent the following morning in the ER vomiting continuously for hours. "You just need to stop eating so many pizzas and cheeseburgers," said the doctor plainly.
I wanted to fix my life, and that is exactly what I tried to do . . . for the next ten years. I can't work, so I can't get health insurance. I don't have a diagnosis, so I can't recover and start my life over. I can't even get Medicaid or disability! And without health insurance, I can't even try to find out what's wrong. I have spent the last 10 years of my life hopelessly stuck. I have no control over my life anymore, and my undiagnosed illness has completely taken over. It's not for lack of trying, though. You name it, I have tried it:
- I don't have a husband who can just pay for anything for me, I don't have a boyfriend who can help me out, and I don't have friends and family who can do anything, either.
- Clinics only take care of basic medical needs. They are not equipped to handle complex medical cases.
- Walking into a hospital and asking for a diagnosis will not work, either. They are there to stabilize you and send you home, not diagnose you. All they will do is refer you to a specialist and send you home.
- When the new healthcare laws surfaced, I didn't qualify for anything then, either. The new laws utilized tax credits to get discounted health insurance rates. I can't use the tax credit, because I don't pay taxes. Why? Because I'm too sick to work. My state's governor also chose not to participate in Medicaid expansion, so that option is out.
- GoFundMe is a crowd-sourcing website that asks the public for donations. A wonderful friend donated $100, which went toward the cost of one month of health insurance and copays totaling almost $300. The specialized hospital, which was two and a half hours away, only had one appointment available during that time. I did not get a diagnosis.
- I managed to move in with a friend from Atlanta in order to qualify for GradyCare. I went to appointments for two years. I did not get a diagnosis.
- While living in Atlanta, I applied for General Assistance twice. The program denied me both times, because I do not have a diagnosis.
- UnitedWay and the RedCross had nothing for me. All they could do was refer me to shelters.
- The AllSup hotline is for disability applicants. If you do not have a diagnosis, they cannot help you.
- Calling hospitals and begging them to help you just doesn't work. You can cry, beg, and scream until you pass out. It doesn't work.
- Writing letters to television show personalities doesn't work. I wrote to Dr. Phil, Ellen, and Oprah and never got a response.
- Contacting government entities is a waste of time. I have emailed the mayor, the governor, and the White House. All they can do is make phone calls on your behalf. And it doesn't help.
- Emory's charity program costs $800 up front.
- Mayo Clinic Charity Care is for patients who already have a diagnosis but can't get specialized care anywhere else.
- To participate in the Undiagnosed Diseases program, your doctor must apply on your behalf. But he or she will likely want to do his or her own tests first. Either way, I'm out of luck.
- Syndromes without a Name and In Need of Diagnosis will offer emotional support and resources, but they cannot diagnose you.
- In order to participate in genetic testing, you must have insurance for at least six months.
- When I applied to the Waycross Indigent Care Program, I submitted more than 30 pages of documentation. They denied me because "you already had all that testing done at Grady."
- WellStar has a Financial Assistance program. Unfortunately, it is for "hospital encounters only." I even asked if the program would cover it if I just walk into the hospital and insisted on treatment. It won't.
- I have consulted with several different lawyers. Without a diagnosis, there is nothing they can do.
For ten years, all I did was encounter dead end after dead end. Everyone I have ever encountered, save for a few people, have hated me for circumstances I cannot control. Almost everyone around me was busy chastising, insulting, threatening, and hurting me while I watched my life fall apart. I have lost track of how many times I have had to move. I have gone hungry, I have had to beg for money from strangers, and I have wrestled with impending homelessness more than once. It was a rain that never stopped.
Then, seemingly out of nowhere, a potential solution appeared. I have been in contact with the producer of a film called Undiagnosed: Medical Refugees. She told me about CrowdMed, and, within minutes, I had an active case.
In short, CrowdMed harnesses the power of crowdsourcing to help people get a diagnosis. It is unlike anything I have ever encountered before.
It began when founder Jared Heyman witnessed his own sister go through three years of decline as she struggled with an undiagnosed illness. That very experience is the inspiration behind the beauty of CrowdMed.
First, the website helps you build an anonymous medical case. It guides you during every step along the way. Your case will include everything from your symptoms to the diagnoses you have eliminated. Once you pay a $50 deposit and an optional incentive, medical detectives will suggest various diagnoses. Ultimately, these detectives will vote on the suggestions, and an algorithm will help you determine the most likely diagnosis. You can then take these results to your doctor and discuss a diagnosis.
There are also a number of tools in place that help ensure that CrowdMed is a supportive, helpful website.
- CrowdMed's medical detectives must earn their way to to the top. Detectives will move up the ranks as they offer accurate diagnostic suggestions, vote on other suggestions, and engage in quality interactions within the site. Once users achieve a DetectiveRating of DR6 or higher, they can earn money for their efforts.
- Poor suggestions will not get votes, and will remain at the bottom of the list.
- Patients can flag poor suggestions as well.
- Heyman insists that "rude behavior or insensitivity towards other people and their feelings . . . will not be tolerated on CrowdMed."
Within hours, medical detectives had already begun to chip away at my case. Most of the suggestions I received were legitimate and well thought-out. A few, such as "lifestyle issues" and "depressive disorder," were disappointing. I flagged them and continued onward, undeterred by a few unfounded suggestions. In total, 19 different detectives contrbuted to my case. If I had chosen to offer an incentive, I might have had encountered more than 200 medical detectives.
I could have extended my case for $99, but I chose not to do so. Ultimately, the diagnostic suggestion with the most votes was Ehler's Danlos Syndrome. This was the first suggestion that appeared on the site, and it remained the first item on the list. The disease has five subtypes, and one of them is Vascular EDS. I have suspected Vascular EDS for the last three years.
In just 30 days, 19 different doctors saw my case. Even if I had health insurance, it would have taken at least a year and thousands of dollars to see that many doctors. More than likely, none of them would have been able to diagnose me. CrowdMed was my only remaining option, and it has saved me.
CrowdMed has been my light in the darkness. I was drowning, and they saved me. It feels like I can finally breathe. CrowdMed has been supportive, proactive, and caring from the very beginning. Thanks to CrowdMed, I am starting to identify the demon that has left me broken and without options.
Without CrowdMed, I would be done. There is nothing else available. There is nothing else I can do. I would have had no other choice but to live out the rest of my life trapped in my own circumstances, in a prison without walls, as figurative vultures picked at my remains.
As it stands, I now have to find a way to return to my doctor so that I can discuss my results. But I am one step closer. And CrowdMed is in my corner. CrowdMed is at the frontlines, fighting the fight with me. They have focused on me, a person, and not profits and pride. In a word, that is perfection.