Undiagnosed and Uninsured: Escaping Futility

Living with an undiagnosed disease is a heartbreaking battle that pushes you to the brink of madness. It drags on for years or even decades, eroding your life from within. When an unidentified illness invades your body, it also disrupts your life. No one believes you, no one can help you, and you have nowhere to turn. You are lost and defenseless, stranded in your own hopelessness.

But you deserve answers, too.  So you go to neurologists, rheumatologists, and cardiologists. You see dermatologists, hematologists, and geneticists. You visit every medical professional and undergo every test that exists. And it’s all possible with the precious gift of health insurance.

What happens, then, to those who cannot get health insurance? Even with programs like Medicaid and the new healthcare laws, many people are left without without options:

  • Some undiagnosed patients are too sick to work, so they cannot obtain health insurance through  an employer.
  • Clinics are not equipped to provide invasive, diagnostic care. They only provide basic care.
  • Emergency rooms do not exist to solve your medical mystery. They exist to stabilize you and send you home as soon as possible.
  • The Affordable Care Act uses tax credits to provide discounted health insurance rates. If you are too sick to work, you do not pay taxes, and thus will not qualify.
  • The Affordable Care Act also allows each state to decide whether or not to participate in Medicaid expansion. If your state has chosen not to participate, there is nothing you can do.
  • If you do not have an official diagnosis, you will not receive disability. As a result, you will not qualify for Medicaid unless you are pregnant, elderly, or have children.

The result is a vicious cycle with no escape. You have no health insurance, so you can’t get a diagnosis. But you can’t get a diagnosis without health insurance. But you can’t get health insurance, either. So you apply for disability, but you can’t get disability, because you don’t have a diagnosis. It is a relentless, agonizing loss of control, and all you can do is watch your entire world crumble at your feet.

Despite the crushing uncertainty, you cannot give up. Like any undiagnosed patient, you must be your own advocate. Without insurance, your diagnosis journey is significantly more difficult, but not impossible. No matter the outcome, you cannot go down without a fight.

  • Start with CrowdMed. In order to use CrowdMed’s services, you do not need health insurance. If you can’t afford a case, you can apply for the CrowdMed Patient Relief Program, which could provide “a Standard case package free of charge for two months” (Help Undiagnosed Patients, n.d.)
  • Do the research. You can research symptoms, doctors, hospitals, specific diseases, and anything else that might help. Google will yield the most relevant search results, and you can  use operators to search for specific phrases. Enclose exact phrases in quote marks, and include a plus-sign between phrases. For example, if you search for “debilitating fatigue” + “female pattern hair loss” + “unexplained bruising,” Google will search for those phrases, not each individual word.
  • Utilize social networking. Connect with as many organizations, non-profits, and medical companies as you possibly can. Do so on as many social networking sites as you can. They could post information about medical studies or other helpful information that might provide a diagnostic lead. Try Syndromes Without a Name, Rare Genomics Institute, the Rare Diseases United Foundation, the Rare and Undiagnosed Network, and Global Genes.
  • Communicate frequently. Find message boards and online forums, and ask a lot of questions. Initiate dialogue anywhere you can. Send emails to everyone you can, even talk show hosts and news outlets. Make every phone call you can. Follow up with more emails and phone calls. Pursue every lead relentlessly, and refuse to back down. Make sure you keep a record of the names and contact information for every communication effort.
  • Find your state’s indigent patient programs. Most states have plenty of clinics. But you need in-depth care and extensive tests. Georgia, for example, has Grady Care, Waycross Indigent Care, Indigent Care from Monroe County Hospital, Care Partners, and First Choice Primary Care. You may not qualify for every program, but every failure brings you one step closer to success. To find resources in your area, start by searching for “indigent care near [your ZIP code]” or something similar.
  • Learn about financial assistance policies. Call the hospitals in your area to find out which facilities have a financial assistance policy. The billing department can answer all your questions. If you qualify for financial assistance, the hospital could reduce or eliminate your bill from a single visit. Make sure you meet deadlines, and understand that some departments will bill you separately. You must know what to do for every portion of your bill.
  • Connect with the right charities. Crowdfunding sites like Kickstarter and GoFundMe could give you a financial boost. Create a compelling page, and update it often. You could also connect with charities such as U. R. Our Hope and the Undiagnosed Patient Program from Global Genes.
  • Try working from home. Some indigent care programs still have copays, which is a problem if you’re too sick to work. But there are a number of teleworking positions that allow you to set your own hours. That means you can sneak in an hour or two in between debilitating symptoms, hospital visits, and recovery. Try petsitting, babysitting, freelance writing, or any other potentially promising option.

From there, you simply wash, rinse, and repeat. As you revisit your options again and again, you will inch forward. You will progress one baby step at a time. It will be painfully slow, and it will push you to the brink. There will be tears, anger, and doubt. You will feel a despair so deep that it doesn’t feel human. You might have to shut down a lot, and that’s okay, too – as long as you get up again.  This is your life and your body. It’s time for you to take control.


Affordable Care Act (ACA) Tax Provisions. (2016, April 22). Retrieved May 15, 2016, from https://www.irs.gov/Affordable-Care-Act

FINANCIAL SERVICES. (2016). Retrieved May 15, 2016, from http://www.monroehospital.org/getpage.php?name=Financial_Services&sub=Services

Frainee, J. (2012, July 31). 20 REAL companies that want to hire you to work from home. Retrieved May 15, 2016, from http://seedtime.com/real-companies-that-will-pay-you-to-work-from-home/

Help Undiagnosed Patients Find a Cure. (n.d.). Retrieved May 15, 2016, from https://www.crowdmed.com/cpr

UNDIAGNOSED PATIENT PROGRAM. (2015). Retrieved May 15, 2016, from https://globalgenes.org/undiagnosed/

Who is eligible for Medicaid? (2014, February 12). Retrieved May 15, 2016, from http://www.hhs.gov/answers/medicare-and-medicaid/who-is-eligible-for-medicaid/index.html

Published by

Deanna Brownlee

Deanna Brownlee

My name is Deanna Brownlee, and I have an undiagnosed disease. For 10 years, my unidentified illness has yielded only futility and heartbreak. As much as it has stolen from me, however, writing has always remained by my side. I am truly honored to be part of the CrowdMed team.

  • Cbeard

    My brother has what seems to be a neurological problem. With symptoms similar to ALS, Parkinsons, etc. His hands shake, he stumbles when he walks. He’s been to numerous Doctors including to Emory in Atlanta, Ga. Also he has lost his voice. He can no longer speak, only a faint whisper if even at that. Since I am his brother, I don’t have access to all his medical records but all the aforementioned neurological diseases have been eliminated as possibilities. I have some 2nd hand info via his ex wife that a Dr. at Emory told her his vocal cords were not paralyzed and said Dr. asked her “do you think it could be in his head”? He is now in the 2nd week of visiting a speech therapist three times a week. Today is his 4th appointment so I guess its too early to tell if it will help his speech. We need some recommendations on what do do next concerning all his symptoms.