Tagged patient advocate

Medical desperation

There are so many people with chronic and mysterious symptoms that the western world has developed show-and-tell entertainment around being sick. There are television shows, corporate websites, online series, and major news segments dedicated to showcasing all of our complications. Why do we engage with industries that make a profit off of our pain? Simple. We are desperate. With hundreds of thousands, even millions of people looking for cures to their long-term ailments, the appeal of sharing your problem with the world and getting a solution quickly is overwhelming. Maybe there is a doctor out there who is interested in…

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…