Here are all CrowdMed Blog posts on the topic of Being Undiagnosed. Roughly one in ten people suffer from a rare, difficult-to-diagnose medical condition which recent reports show could take an average of 10 years to diagnose. While our approach is helping more than 70% of patients whose doctors had no answers, to finally get answers, the stories we hear every day are simply heartbreaking, and give us ample energy and focus to keep following our mission of helping everyone with a rare, undiagnosed or unresolved medical condition.
That’s my default response when people ask me how I’m doing. And it’s the truth.
When I last detailed my grueling diagnosis journey, it had ended on a hopeful note. There was one remaining obstacle, however. I still had to confirm CrowdMed’s suggested diagnoses with my doctor. But I can’t afford a doctor or health insurance, so I wasn’t sure how to move forward.
When you are suffering from a rare disease, It is easy to feel isolated. The symptoms you are experiencing are not always recognizable by loved ones or doctors and with that, can sometimes go unacknowledged.
Patient “Barry” was a classic example of this. “Barry” came to us after suffering for 30 years with chronic urinary and metabolic issues and a history of serious illness. This patient was strong enough to beat leprosy at the age of 13, urinary tuberculosis and survive years of pain that eventually brought them to CrowdMed for answers.
If you’re a rare or chronic illness patient, you’re probably accustomed to tweaking your schedule, eating habits, exercise routines, and even your chores and social life. Even when your life does go according to plan—your symptoms may not. One moment you might feel fine and the next you’ll be looking at a weeklong hospital stay.
In the beginning, I struggled to balance my symptoms with running a business and trying to maintain friendships. My disease took a lot out of me and at the end of the day, no matter how much I may have wanted to go out and meet a friend or take a business meeting in person, catering to my symptoms had to come first.
I decided what I really needed was to get organized. I sat down with my laptop and started a data collection on my own life.
Continue reading Can Facebook Help Measure the Intensity of Your Flares?
Living with an undiagnosed disease is immensely difficult. It is an endless journey of hopelessness, confusion, questioning, abandonment, and destitution. It is physically, emotionally, and financially draining. In a living death that drags on for years, all you can do is watch your life spiral out of control. Your body is failing you, and your doctors don’t understand why. Your friends and family, however, seem to have plenty of answers. While they may be trying to help, their comments only come across as minimizing, insensitive, and judgmental. Fortunately, there are ways to discuss your undiagnosed illness without destroying relationships. Following are a number of statements that your loved ones should avoid as well as effective alternatives that can foster a supportive conversation about your health.
1. “You should try getting more exercise.”
While exercise is generally a good thing, I don’t need judgmental lifestyle advice. I need medical advice from a medical professional. I’m battling a demon far greater than you could ever imagine. It’s not about exercise. It’s about a legitimate medical condition that requires complex medical care. To suggest otherwise is minimizing and hurtful.
Instead, say: “What can I help you with around the house?”
Lyme disease can present with a wide range of symptoms, resulting in frequent misdiagnosis. The most common presentation includes fever, fatigue, headache, and a bull-eye rash at the location of infection, but as many as half of infected individuals never report a rash and present with other symptoms.
And, you may be surprised to hear that the most diagnosed illness on CrowdMed is Lyme disease. The issue of misdiagnosing and not even arriving at a diagnosis at all when someone has Lyme disease is clearly a problem.
EDITOR UPDATE: Several readers pointed out some outdated information referenced in the original overview. There’s nothing worse for patients than trying to fight prevailing “wisdom” in the medical community, which simply isn’t true anymore. We’ve updated this post accordingly. By the way, we’ll also soon be publishing an article by one of our patients, highlighting her personal experience and frustration with Lyme disease. Stay tuned!
Continue reading Facts About Lyme Disease: The Misunderstood Condition
As the measles virus makes its way back from the brink of extinction, the public sphere has been flooded by heated arguments for both sides of the vaccination debate. For what seems to be the majority of Americans, this is a battle between science and irrationality. Yet amid the media hype and angry rhetoric an interesting theme has emerged in the outbreak’s narrative. In defending themselves through interviews, discussion forums, and even the mouthpiece of political candidates, many parents claimed that trust was at the heart of their decision not to vaccinate. How could they trust that the government, the CDC, or even their family doctor know what is best for their child?
Continue reading The Vaccination Debate Isn’t About Science: It’s About Trust
What would you do if you begged for help for years, but no one listened? What would you do if you needed emotional support, but you got only judgment and ridicule instead? What would you do if you if the world forgot about you?
This is the structural violence that undiagnosed patients experience every single day.
Continue reading What’s In A Name: Living The Undiagnosed Life
We are humbled and honored to share the story of Deanna, one of our patients, who yesterday published an article on Examiner.com about her experience with our system. As you will see, she had a fantastic experience.
Most importantly, she also shares her own journey to arriving at a diagnosis. Like most of our users, she had spent years unsuccessfully vainly trying to get a proper diagnosis, and had almost given up hope when she heard about CrowdMed. Continue reading For 10 Years No One Believed She was Sick
CrowdMed helps people get answers to medical symptoms that have eluded diagnosis for months or even years. We recently gathered a list of the medical conditions, diseases and genetic disorders most frequently suggested by our global network of crowdsourced “Medical Detectives” – experts in medicine, science, healthcare, education and research who review patient cases submitted to the company – and whose collaboration helps patients figure out what’s wrong with them. The results are very interesting. Continue reading The Top 20 Most Common Uncommon Medical Diagnoses
