When you are suffering from a rare disease, It is easy to feel isolated. The symptoms you are experiencing are not always recognizable by loved ones or doctors and with that, can sometimes go unacknowledged.
Patient “Barry” was a classic example of this. “Barry” came to us after suffering for 30 years with chronic urinary and metabolic issues and a history of serious illness. This patient was strong enough to beat leprosy at the age of 13, urinary tuberculosis and survive years of pain that eventually brought them to CrowdMed for answers.
“Barry” was kind enough to share their story with us in what we hope will be encouragement to those out there suffering from chronic illness that they are not alone in their struggle and that there are people out there who want to and can help.
When you are ‘unwell’ for more than 20 years, one learns to cope. You manage to chug along: you smile and you pray for good days and minimal bad ones. To make this daily routine more difficult, you are suffering through multiple surgeries and hospitalizations with no real diagnosis. You have completed ‘doctor shopping’ and still have no answers, but you know that something is not right somewhere in your body.
In a situation like this, both doctors and friends label you either as psychotic or a pill popper, usually both. Close family members are at loss of how to react. They share the illness. They cater to my suffering everyday and they cannot be expected to be empathetic endlessly. Chronic undiagnosed illness often leads to marital discord if not divorce. This entire concoction saps a patient often more than the illness itself, especially if you have no answers.
It is in this chasm that CrowdMed is a god send. Suddenly, the patient finds that they are not entirely mad. CrowdMed is where one hears of others in a similar or sometimes worse position. It is here that one finds medical detectives who probe and ask questions rather than pronounce judgements. It is here one finds an approach that is beyond ‘medical only’ but laced with empathy, understanding and a human touch. It is here that a difficult medical situation is explored beyond the normal depth, where multiple, non-standard options are looked at.
The icing on the cake is that none of the detectives seem to be monetarily motivated, but the gratification from another human is their currency.
My medical situation was explored in many different ways since the problems were multiple and present for over 25 years. A possible common thread was identified and some existing diagnosis and treatment were stopped . Most importantly the structured thinking made my physician re examine certain diagnosis disregarded earlier and commence medication for the same.
I am not problem free, I still have many problems, but many solutions as well. Most importantly, I am richer by the empathy, understanding & caring human contact. My only regret is that I cannot meet some of the medical detectives who were the most important elements of this caring human chain.