As much as you hear and read about chronic Lyme disease, adrenal fatigue and chronic fatigue syndrome, most health insurers (and even some doctors) do not consider these conditions to be “real.” The problem is, there is no single diagnostic test that proves any of those conditions is the cause of symptoms you are experiencing—even if your doctor and experts who specialize in treating those conditions conclude that you do have the disease. Some of these conditions have diagnostic codes that are required to file an insurance claim, but many insurers deny the treatment protocol being prescribed, such as long-term antibiotic therapy for chronic Lyme disease.

As foreboding as this sounds, there are ways to improve your chances of getting the health insurance and disability insurance coverage you need. Here’s my four-step plan for overcoming the controversial diagnosis barrier…

• Check the fine print. A number of health insurers exclude certain conditions, many of which are controversial diseases. Carefully review your policy for these exclusions or call customer service and ask for a list of excluded conditions. Make sure to also check under specific categories—such as alternative treatment for chronic fatigue—for exclusions that may not be on the main list. Insider tip: If you’re shopping for your own coverage, try to purchase policies with as few exclusions as possible. If your employer provides your health and/or disability insurance, see if there are options with fewer exclusions. 

 • Get it in writing. When you’re diagnosed with a controversial condition, it is crucial that your doctor give you his/her diagnosis in writing along with copies of all test results that led him to make that diagnosis. If a claim or course of treatment is denied, it’s your doctor’s written treatment plan justifying the recommended course of treatment that you’ll need to give to the insurer. Insider tip: Emphasize to your doctor the importance of a detailed explanation supporting his treatment program. 

• Seek a top-notch expert’s opinion. If an insurer denies your claim, get a second opinion from an expert in the field. You may have to go outside your local area to find such expertise. Second opinions are typically covered by insurance, but even if you must pay for it up front, it will be money well spent if it helps get your claim approved. Start your search by contacting a major teaching hospital in your region to locate a specialist. If you strike out there, extend your search to one of the nationally known medical centers such as Mayo Clinic or Cleveland Clinic. Insider tip: Because some experts can base their second opinions on a review of your test results and treatment plan, you may not need to be physically present. 

• See how others have fought—and won—insurance denials. Seeking help from others with your condition can be especially useful when it comes to dealing with insurance. There are self-help groups for just about every condition imaginable, and most have local or state chapters that offer support and suggestions based on the members’ own experiences, including how they fought insurance denials. You can find these groups by doing an online search. Simply enter “support groups for (list the condition).” 

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