Getting a diagnosis is a very important step in your journey of chronic illness. Along with giving you a better understanding of what’s going on inside you, it can help with the process of getting accommodations and processing insurance claims. Although a diagnosis isn’t likely to be the end of your story, it’s certainly something you’ll want to pursue if you’re able.

Unfortunately, due to the vague, inconsistent symptoms many chronic illness patients experience (fatigue, pain, disorientation, and so on), as well as a serious lack of research in the relevant fields, many chronic illnesses are very difficult to diagnose. In fact, according to one 2014 report, “patients report it takes more than three-and-a-half years and nearly five doctors to receive a correct autoimmune disease diagnosis.”* Although not all chronic illnesses are autoimmune-related, the experience appears to be similar across other types of chronic illness as well, with many spoonies struggling to be taken seriously by their doctors, as well as having to fight to find doctors with the appropriate knowledge to run the right tests and point them in the right direction.

What this means is that you will need to take on the brunt of the work, and become an advocate for yourself and your health. Unlike a toothache or a cold, what you have is likely not something your doctor has seen (or read) much of before. So, you’ll find yourself taking the lead, asserting that your symptoms are at a level that merits concern, asking your doctor to run certain tests, requesting referrals to specialists, and so on.

Because many doctors and nurses (especially general practitioners) are likely not well-educated in the illness you’re experiencing, you’ll find yourself searching online—Googling your symptoms, talking to other spoonies, reading blogs, and so on. To a healthy person, this may appear obsessive (“stop trying to diagnose yourself!”), but in moderation it can be a huge help in the process of receiving a diagnosis. Eventually, you’ll become an expert in your own condition, and surprise your doctors with all the information you’ve soaked up!

One thing I can’t stress enough is keeping records of your symptoms, doctor visits, medications, treatments, and insurance claims. A lot of spoonies experience “brain fog” as a part of their symptoms, which it makes it even harder to keep track as they go from doctor to doctor. Be sure to protect yourself from this sort of experience, especially when insurance, disability status, medication regimens, etc. are at stake.

*http://www.aarda.org/news-briefing-for-autoimmune-disease-awareness-month-2014/

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

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