8 Things People Searching for a Diagnosis Want You to Know

It’s warm today, and Erin’s resting on her beach chair. The sun warms her face as she quietly hums the song playing on her headphones. The beach is noisy today, but she’s trying hard on focus on this relaxing moment. She concentrates on the cool air that wisps across her toes, and despite the noise, she drifts slowly off to sleep.

“We’re done,” cuts in a voice that interrupts her music and startles her awake.

“Thank goodness,” she sighs as she begins to move forward and out of the MRI machine. Her daydream was over. She felt fortunate to have drawn her focus away from that confined and noisy space. But a feeling of disappointment came over her. She wished her moment away wasn’t just a dream. In fact, the last few months for her have been like living in a nightmare.

A few months ago she began to feel sick. She was tired, her body ached and she felt like she was coming down with the flu. She took a couple days off work, and when it was time to return, she still didn’t feel better. The weekend passed, and she still couldn’t shake what she thought was the flu or some sort of virus. She returned to work and held strong, hoping her symptoms would improve, but they never did. The symptoms and the addition of widespread pain was beginning to disrupt her life. She couldn’t concentrate at work, and by the time she got home, the extreme fatigue and pain kept her from keeping up with her normal responsibilities at home. Deep in her heart she knew something wasn’t right.

It began to slide into every aspect of her life, and she knew she needed answers. She was disappointed to learn that when she went looking for answers, she’d only end up with more questions.

“So, what’s wrong with you?” she would be asked.

“I don’t know.”

“What do you mean you don’t know? Didn’t you just have an MRI?”

“I did but they couldn’t find anything,” she said, feeling defeated.

“All that money spent for nothing?” Her heart sank hearing those words. She had hoped others would see her quality of life would be worth the investment.

The time and money she invested in searching for an answer was only feeding her increasing guilt, but she kept reminding herself of why she was searching. She often had to keep going even when she felt like the doctors had also given up.

No one wants a diagnosis, but everyone deserves a chance for treatment and hope for a better quality of life. Those living in the gray area between health and a diagnosis are lost. They’re always searching, researching and asking questions. They’re often seeing various specialists and submitting themselves to tests that can consume time and strain finances. Their symptoms aren’t in their head. They’re like Erin in my story. She’s an intelligent, loving mother of two who works for a living. She is active in the lives of her children, but she also knows something with her health isn’t right.

But the woman my story could also have been my own mom who searched for 55 years before receiving a diagnosis. The woman could also have been me. I knew something wasn’t right with my own health for more than 10 years. After various doctors’ appointments, tests and questions, I found my own diagnosis after plenty of research. My diagnosis finally came after I asked my physician, “Could you please test my blood for rheumatoid arthritis?”

People searching for a diagnosis want you to know:

1. I do need answers.

2. I need support and understanding.

3. I need help.

4. Do not judge me.

5. Don’t ask me questions about my search and then cut me down.

6. Please don’t offer alternative healing until I have a diagnosis.

7. Don’t tell me it’s all in my head.

8. Listen to me.

As for Erin, she’s going to keep searching because she needs answers so she can have hope for a better future, for herself and for her children. She desperately desires the chance to experience life without the disruptive symptoms attached to an unknown diagnosis. She deserves to get up each day and know what she’s facing. She deserves a chance for a fair fight. She and all people living in the gray zone of the undiagnosed want and deserve the same.