I feel that truth, even when not good, can yield something good in the end. So, I write this post: (excuse my grammar, etc. I have HORRIBLE tooth pain and I am seeing the Dentist on an emergency visit in about two hours...)
VERY QUICK BACKGROUND ON MY SYMPTOMS:
Compared to the members of this board and your self-reported symptoms (and I know this for a fact because I can look at the test results and compare myself to you), I do not even qualify as a person with DP and/or DR. Instead, I suffer from constant visual disurbances somewhat near about .5-1 hit of LSD and the severity ranges on various factors. Many doctors do not even believe it is a real condition, but trust me it is. Additionally, my body is overwhelmed by horrible pains that could never be explained by something "physical" (quotations used VERY purposefully) -- I have been to the Emergency Room more times than I care to tell, just to be told I have an "ear infection, maybe" or "Well, we are not sure why you feel like you are having a heart attack." and being treated like a hypochondriac. So, associated with my HPPD (visual problems/feelings of tripping) and my unexplained and sometimes day long panic attacks and physical pains (I do take Klonopin to help eliminate this last symptoms) I consider myself somewhat unusual with an unusual dis-ease.
NOW MY STORY ABOUT TELLING PEOPLE
I got HPPD in 1998 and two years later, after making my first version of HPPDonline.com I got up the courage to tell my parents I was a drug user and to tell them about my HPPD. I could tell that they did not believe a word I was saying. My parents are normally very reasonable and understanding, but for the first time they were hearing that their child (who still in their mind is sitting by the fireplace playing the violin for the family) has abused large quantities of exotic hallucinogens and now I am telling them that I have a visual problems may never go away -- essentially saying that I will be tripping for ever.
My parents never used hallucinogens, so they could not conceptualize for a moment what HPPD was like. I feel that HPPD would be easier to explain then DP/DR to a person any day. At least I could talk about some tangible experiences: "I constantly see objects swaying in my vision, I see colors shifts in my vision", whereas describing "Well, I feel as thought I am not myself and out of my body." is a little harder to put objectively.
To continue my story, my parents "pretended to believe" me for over the next 5 years. I didn't find out until one day during an argument with my mom that they didn't believe that I had HPPD, or even if I did -- it wasn't that bad. They thought I had spent the last 5 years of my life making and operating the HPPDonline.com web site, visiting Dr. Abraham (who is to HPPD that Dr. Simeon is to DP) many states away and getting a quantitative EEG (a 6 hour test, which showed the electrical abnormalities in my brain), after Administering the HPPD message board, going on NPR to talk about HPPD... they thought that it "wasn't that bad." or that I used the message board for "attention" and made up HPPD to get KLONOPIN.
I flipped it, I lost me cool.
I never swore at my family, I never raised my voice, but this was enough and the line that broke me was my mom saying, "It can't be that bad to have what you are telling me, it can't bother you that much."
WHAT ARE YOU THINKING?!?! I CAN'T SEE STRAIGHT, MY VISION IS CONSTANTLY FULL OF COLORFUL HALOES, AND I CAN NO LONGER READ LETTERS WITHOUT THEM SWAYING OR TURNING COLORS?!? WHY WOULD I LIE, AND EVEN BE USED AS THE HPPD POSTER CHILD BY NOBEL PRIZE WINNER DR. HENRY DAVID ABRAHAM TO TALK ABOUT HPPD ON THE RADIO??? HOW COULD SHE SAY THIS??? HAVE THEY BEEN SO BLIND?!? Apparantly, I was inventing HPPD to get Klonopin?!? Do they know how boring Klonopin is and how easy it would be to obtain on the street? I was the President of our school's National Honors Society, I did what I was supposed to so, and now apparantly I have put up a 5 year scam.
These are not the words I said to my parents, but I think the phrase "your f#[email protected]
&*# #$*($%(@# #$(&)(#% HOW COULD YOU BE SO #$#(& IGNORANT YOU F--CKS."
I never swear in front on my parents and it took them back. My parents had to leave the house that day and during those hours I packed my stuff and waited with my bags to move to the other side of the USA -- 2500 miles away. I had just enough money to get me across the country and had a friend picking me up. I left that day, as my parents returned and told them, "I can no longer live with people who trust me so little despite so much evidence."
I knew why it was hard for them to believe, HPPD is barely recognized as a medical reality except by the brightest of doctors and how could they believe "their" son would have it.
Then 8 months later, I came home. Suddently, my parents began believing me. They suffered from their own unexplainable psychological problems and became dependent on benzos to help their unusual problems. They received phone calls from lawyers, doctors, contractors, and other mature individuals that spoke to them and said the my web site saved their lives and their jobs. My parents spent the time to look at the web site, and they read through the posts. They finally believed me.
That is how the beginning of NODID was formed. I though, if my own parents couldn't believe me, DESPITE having so much medical back-up (I owned every journal article on HPPD and related problems there was), so much evidence (going on the radio, seeing Dr. Abraham, the qEEG brain electrical mapping), and being such an honest kid to tell them that i used drugs, and running and designing a web site on this disorder... I couldn't even get my parents to believe me about my HPPD! WHY WOULD I LIE ABOUT THIS?
I don't think they wanted to believe that their son used drugs, or that this wasn't a reality.
How could someone, without the resources that I had at the time, get their parents to believe that they have these rare and "hard-to-prove" disorders? Even Chronic Fatigue Syndrome? Imagine the 16 year old kid with severe DP, trying to explain it to their parents? Are they going to consider him schizophrenic? How does he or she tell their parents that they took a drug and didn't realize that this drug was going to change their lives in ways they could never ever imagine.
This is the goal of my organization, to be the voice for those who can't speak themselves. I don't want to spend time marketing the needs of the organization here, but I wanted to show you that even in my position and background... it was difficult for me to tell my symptoms to my parents and despite all that evidence they didn't believe me.
But now... my Mother is the treasurer of NODID. Sometimes it may take some time, but my story ends positively.
All my best, again apologies for the lack of clarity in the post... my lower left pre-molars are SCREAMING with pain and I can barely sit still.
(not as the president of this or that, but as a friend)