Helping the Newly Floxed: Comfort and Information
The positive thing about fluoroquinolone (FQ) web groups, whether they are email lists, forums, or groups, is that there is usually a lot of information available. It can be a helpful thing to have varying viewpoints on such things as healing, medications, supplements, testing, etc…, because it allows the user to make more informed choices. But there is darker side to all this information. When a newly floxed person first ventures into the waters of internet in search of answers on the mystery of FQ’s, the information can be overwhelming. More than once, I have heard of a newbie turning away from the Internet because of the overwhelming shock of what they have discovered there. Only after the shock has wore off do they venture back cautiously peering behind the door to see what information that they can glean hoping not to be brought to their knees again.
We, as humans, have a psychological tendency to project ourselves into another person’s journeys. So it is easy to read about another FQ victim’s horrific story and then place ourselves firmly into that person’s shoes. I am guilty of this every now and then. I read another FQ victims tale of tragedy and see myself in those shoes. Then inevitably, if we put ourselves in that position, we usually experience worry, fear, depression, and anxiety. Although these emotions are normal for anyone experiencing illness, they can be exacerbated by too much information. We have to temper our fear with the fact that everyone’s physiology is different and that there are a million different variables in play. Even though reactions can be similar in nature, there are no two completely identical reactions.
So how do we get past this emotional overload? That is a hard question to answer. Each newbie that usually enters into the world of FQ damage is mainly there for a few simple reasons. Those reasons are usually for information and comfort. I have found that most people want the truth; they do not want to be lied to or have any information candy coated. Other the other hand they do not want to be punched in the face with it either. If a newbie, who enters the FQ scene, runs into the wrong person, who by their own personal circumstances are cynical, cold, angry, frustrated, and depressed, they can be set off on the wrong path, sometimes with tragic results.
Even a seasoned FQ sufferer can be negatively affected by another person’s hopelessness. Every now and then I, myself, get too caught up in someone else’s depression that I have to turn away from it for a while, lest I fly to close to the sun and singe my wings. After all, there are some dark realities out there that scare us if we look at them to long. Man, as a creature, is not new to suffering and FQ victims do not have a monopoly on it. But our plight is unique in that we have been damaged by an ignorant medical establishment through no fault of our own. However, mankind has long wrestled with the just world hypothesis and why bad things happen to good people. I have never met an FQ sufferer who deserved to be poisoned by a toxic drug given to them by a medical doctor. But when we, as seasoned FQ sufferers, talk to those that are newly floxed have a responsibility to help them ease into the discomfort of the situation, lest we perpetuate one bad instance after another.
Another way to overwhelm the new FQ sufferer, or the seasoned one for that matter, is with pure information overload. Now I consider myself a fairly smart person and I am able to understand most information given to me, even though I may have to reread it numerous times. But, even I get overloaded with raw data from individuals. FQ victims run the gamut as far as intelligence goes. Their intelligence stratum is very varied from those who barley understands what is happening, to those who should be splitting atoms in a lab somewhere. I will give you an example. The other day I asked a question of another floxie about brain neurotransmitters, which I consider myself fairly well versed. I received the following information as part of an entire page long dissertation of raw data. “The seven mammalian TRPC channels share a structural motif in the COOH-terminal tail, the TRP box, which is located close to the intracellular border of S6 and contains the invariant sequence EWKFAR.” What??? Now to me intelligence is not a matter of just what you know, it is also conveying it to others in a form in which others can understand it. This goes for all the data associated with FQ’s. We need to convey data in such a way that everyone understands what we are trying to say, especially the new victim.
What is the moral of this story? I was never offered a comforting hand until well over a year into my plight, even though I was posting on the Internet. There are newly floxed individuals coming into the community everyday. They arrive here either by having it suddenly thrust upon them or by a long trail of clues and connecting the dots. When they arrive they are experiencing dozens of different emotions including fear, isolation, anger, confusion, disbelief, depression, anxiety, and on and on… To keep from alienating them we need to have compassion combined with truthfulness. One without the other makes the road a harder one.