Tagged rare diseases

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. Sometimes that dismissal seals a sufferers decision to give up. It reinforces their anxieties and amplifies their pain. Along with hope, their motivation for life disappears.  I asked for help everywhere. At first, I didn’t know what was happening to my body. My early symptoms…

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. For instance, we tend to soothe a sore muscle with rubbing, smacking a bug bite that won’t stop itching, or using the distractive method of pinching your arm when your foot hurts. These techniques absolutely work, temporarily. They overload the nervous system and your brain…

I’m just a girl – Diagnosing part 1

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 not a daily thing, a much simpler time in that regard. That lack of access came with its benefits but also left a lot of us lacking easy access to quality information.   About a year into my southern life, I began not feeling well. It…

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 planning my time here, I had to carefully analyze this urban layout. It had to meet my mobility requirements and provide enough amenities so that I could receive timely deliveries when I couldn’t leave the house.  This overly planned style is not how I use…

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 three things: How long have you been experiencing this symptom, what have other doctors said about this, and are you mentally sound? Through my many years navigating doctors and hospitals, I have found that using highly descriptive language is most effective way to express symptom…