I have been sick for a long time but the past four years I have been so sick it has changed me life dramatically. When I was diagnosed I found a lot of comfort in hanging out in online support groups. There were people in these groups that knew exactly what I was going through and in the meat space world there was no one who could fully relate.
After four years of hanging out in online support groups I have discovered something that should have been obvious. When you get a group of people together for any reason you will find there are differences from person to person and the anonymity offered by the internet will bring the asshole in everyone to the surface. I do not need anonymity to be an asshole, I have no problem being an asshole in person or over the internet.
After four years (yes I know I am starting this paragraph the same way, shut up I am sick) I have mellowed considerably and I do my best not to treat everything as though it were a formal debate. I fail sometimes: especially when people are disregarding the scientific method but I am more and more tolerant as time goes on.
The next little bit is cliche but not all cliches are bullshit. Being diagnosed with a rare disease that the cause is not known and that there is no treatment for let alone a cure you will begin to grieve. Your life as you know it has ended and while not as dramatic as actually dying (I am assuming) it is none the less painful and plenty dramatic on its own.
When people grieve no matter what they are grieving for there is always that stage of denial. It comes in many forms. My denial came in the form of strength, I am so strong, so tough, so tempered by the world that I will impose my will over the disease and I will live my life how I want. That was my denial (by the way I am mostly out of denial, mostly) and I have met many people along the way who I have denied in the same way I denied but there are different strokes for different folks.
The most common form of denial I see is that there is a cure but nobody has done the right research or the right research has not been funded or the right research was funded but was not followed up on or even conspiracy theories, big pharma has a cure but they will not give it to us because they want to make money off the sick. Of course these are all wrong but the big pharma one is the hardest to explain to people why it is wrong because big pharma does want to make money. The economics of sarcoidosis is there are not enough of us that are sick that it would make any sense to hold back a cure. The publicity for finding a cure for a rare disease is worth much more than what is gained by giving people fifty year old generic drugs that do not really work that well. One thing about denial, the truth will never be relevant, denial will carry on in the face of the truth!
Below is one of the response I wrote to a guy recently trying to explain to him why a six year old Italian study with 12 participants is not really relevant. He became quite insistent that melatonin was the next big treatment for sarcoidosis. This was my response and I thought I would share it here with all of you. I think I was nice and thoughtful and hopefully made someone think but you know what? Denial, it ain't just a river in Egypt.
Some of this might be a little out of context but I think it flows, if you have any questions leave me a comment.