What you didn’t know, was that you would spend the rest of your life trying to convince people that you are broken. Even as you wrestle with the daily mindfuck that is surviving with invisible conditions, people need you to prove your pain and symptoms. Your word isn’t enough. Descriptions of any detail will never … Continue reading Invisible proof
Tag: rare diseases
I’m just a girl – Diagnosing part 5 (Small Fiber Autonomic Neuropathy)
Numbness on the outside of my right leg. That was the starting point for my entire Small Fiber Autonomic Neuropathy journey. It’s a long one. Hold onto your hats and cozy up with a cup of tea. Here we go: I had recently come back to the United States after working overseas for a few … Continue reading I’m just a girl – Diagnosing part 5 (Small Fiber Autonomic Neuropathy)
Coming around
It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls … Continue reading Coming around
Zebra looking for an umbrella
Having more than one disease complicates everything. Most of those diseases being rare and understudied turn those complications into catastrophes. Doctors don’t know what to do with you and they truly don’t care to try. When you are already suffering from a mystery, the last thing you want is for your doctor to quit helping. … Continue reading Zebra looking for an umbrella
Not theirs to break
Lately, there has been a lot of buzz about treating pain with pain. From studies about the psychology of pain to stories about BDSM as a coping mechanism for living with disease, these articles are written by non sufferers and seem lacking in patient perspectives. The concept of treating pain with pain is almost instinctual. … Continue reading Not theirs to break
I’m just a girl – Diagnosing part 1 (Gastroparesis)
I was 18 years old and living in the American south. It was a new adventure after moving to the U.S just a few years prior. Being eighteen and still adjusting to a new culture, my life was a combination of amazing and incredibly stressful. It was a time before social media. The Internet was … Continue reading I’m just a girl – Diagnosing part 1 (Gastroparesis)
A walk too far
I am currently staying in a place with good public transportation (by American standards). Not only are the metro stations abundant, the lines are also timely and run across the whole city. There is a stop half a block from my home that takes me to large grocery stores, banks, and other errand locations. Before … Continue reading A walk too far
Tricky symptom speak
When you walk into a doctor’s office with acute symptoms, they want to know three things: What are the exact symptoms, what were you doing when the symptoms began, and how bad are the symptoms/pain (often using the ineffective 1-10 scale)? When you walk into a doctor’s office with chronic symptoms, they want to know … Continue reading Tricky symptom speak
Always Bent Sometimes Broken 