When You're in the Dark Tunnel of Searching for a Diagnosis
Sometimes you feel as though you are trapped in a tunnel and no matter how hard you look, you are unable to see the light at the end. This is often what it feels like while searching for a diagnosis. I have been in this boat a few times. It took me two years to be diagnosed with complex regional pain syndrome (CRPS) and it took me 17 years to be diagnosed with Lyme disease.
At the age of 3, I was bit by a tick that had to be surgically removed from my ear canal. I had some joint pain after but it was assumed to be growing pains. I didn’t start to show more symptoms until I was 14.
I developed chronic pain which everyone thought was due to Lyme disease, but the tests always came back negative. I was finally diagnosed wth CRPS but I knew, deep down, that there was something else wrong.
I knew I had Lyme but I couldn’t get a doctor to believe me because the test results were negative. I was in that long, dark tunnel with no light at the end. I continued to fight for a diagnosis and was finally diagnosed by a Lyme specialist. Due to how long it took to be diagnosed, it is considered complex and advanced because it is affecting my heart, brain, spleen and various other organs.
When you’re searching for a diagnosis and feel you are trapped in the tunnel, I have some advice for you. Never stop looking for a diagnosis. You know your body better than anyone so always trust your gut. Don’t just rely on tests. Tests are not 100 percent accurate and neither are the doctors who read them. Find the perfect doctor for you. Do not let them blow you off because you deserve much more than that. You deserve a doctor with compassion who believes in you and listens to you and is willing to help you.
There really always is a light at the end of the tunnel, even if you are unable to see it. You will eventually find it if you look hard enough, and in the end, it will be worth it. Never stop searching for that light even if it means you have to crawl, walk, run or jump to get to it.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via collus5.
At the age of 14 and as a freshman in high school, Nora was struck with a mysterious illness that would cause chronic pain along with many other symptoms. It wasn’t until she was 16 that she was finally diagnosed with Complex Regional Pain Syndrome (CRPS) and Joint Hypermobilty. She was then diagnosed with Late Stage Neurological Lyme Disease and Lyme Carditis 17 years after the initial tick bite. Nora began writing for The Mighty over a year ago to raise awareness for her diseases and as a way to cope. Today, she has over 25 stories published and many shares and comments on each story.
noracaughey