Discussing Your Undiagnosed Illness: How Your Loved Ones Can be Loving, Helpful, and Supportive

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?”

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Genetic Sequencing: an Innovative Method of Confirming your CrowdMed Diagnosis

What is Genetic Sequencing?

Imagine that your body has an instruction manual. It would be millions of pages long, delegating everything from the color of your eyes to the shape of your toenails. Now imagine that there was a single typo somewhere in those millions of pages. It is this typo, or mutation, that causes disease. Genetic sequencing is a computerized method of locating that mutation.

There are two types of genetic sequencing:

  • Whole genome sequencing analyzes all of a patients genes. It costs more but produces more information for research.
  • Exome sequencing analyzes the small portion of your genes where most mutations occur.

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Diagnosis Spotlight: Lupus

Lupus: The Basics

Inside nearly every human body, there exists a vast expanse of cells that fight infection. Like a tiny army, it descends upon foreign invaders and swiftly eliminates the threat. It most cases, it’s a system that works well. In some cases, however, a significant problem arises.

Lupus, occurs when the human immune system destroys infection as well as health tissue and organs. As a result, patients will experience ongoing pain, inflammation, and malfunction throughout the body (Understanding, 2015).

One of the most distinct symptoms of lupus is a persistent rash across the nose and cheeks called a butterfly rash. There are also a host of other symptoms including debilitating fatigue, headaches, fever, pain and swelling on the joints, chest pain, hair loss, and ulcers of the nose and mouth (Diagnosing, 2015).

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What’s In A Name: Living The Undiagnosed Life

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.

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