[fingertingle]

I need some help. I need to explain this "thing" to my friend and I need to explain it in a way that a person without this would understand.

How have you guys told people and what have you said to try to explain what's going on inside your head to people who have never experienced this?

I know its different for everyone, but I can relate to a lot of the things that are said on this site and I know I myself have these revelations of articulation where I know the PERFECT way of explaining something. Unfortunately, I'm really nervous about this. I know she won't think I'm insane, but I want to explain this in a way that sinks in, so I don't have to explain things over and over again: so she can kind of look into my actions as being reasonable relative to the perspective I'm forced to live in and therefore, maybe begin to forgive me for being a sometimes shitty friend. :/

Any ideas would be GREATLY appreciated, thanks.

 

[shadowness]

one thing i found helpful when explaining thoughts and feelings of dp and dr to someone is to know what they DO understand and use that...

my boyfriend for instance...he plays video games and i explained to him about my vision and numbness using the example of a video game...

i said something like...

"you know when you are playing a game where you can see your characters hands doing all the shooting and punching...but you cannot feel those hands but you know you are controlling them? and the way the image of your hands is flat against the background image as the picture is not 3D?

...well that is what it is like for me...i know my hands are mine but they just feel like part of the background...and my vision is just like a flat screen...my body just being part of everything else"

he really got it when i explained those factors of my dp and dr as it is something he can relate to...ok he does not know what it is like to be dp'ed and dr'ed but that gave him some clarity as to what it is like for me personally...

same thing for a great friend of mine...she asked about how can my vision by 2D looking...and she likes looking at paintings....so i said to her...

"imagine you are in a room....where all the walls are painted to look like there are 3D object coming out like a bookshelf and a telelvision and a table...it is painted so well that you think it to be really there but it is not...that is kind of how it looks...and feels...thinking is it really there or not?"

and that just clicked with her as she had been in an all painted room in a gellery and felt very disorientated at the sight of a room looking so real but the images are false....

find something your friend can relate to if you can...and then they can really stand in your shoes...or as close as posible to someone who has not experienced this...

or find out if she has experienced the same kinds of feelings and thoughts due to something else...like an accident or bad flu or something...anything that she may be able to relate to and think "ah right! i got it!"

i do hope that helps...sorry i cannot be more helpful....

even from people that i have explained this to ask me more questions...but the more questions means being closer to understanding...so maybe just a question and answer session might help?

it is wonderful to have people who know about my conditions...i explain them to anyone who asks in as much detail as posible...sure i have lost a lot of friends that way...but it means i find out who my friends really are...

if they do not fully understand...that is ok...we should not expect people to understand all this if they have not gone through it....or even people who have gone through it as peoples experiences are different...

take care of yourself...

 

[David Kozin]

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.

- dk

(not as the president of this or that, but as a friend)

 

[David Kozin]

I know I started my organization, which again is a bare-bones operation, but would it not be nice if we all had (drug-induced or not) printed literature that we could give to people, which was succinct in nature that could explain our problems, give people phone numbers to call, and give people references to the science beyond the problem?

Honestly, it is easy for me now to get treatment for my HPPD and even recently I had some tests at a very reputable University to ensure I had no cognitive problems associated with my disorder (luckily I did not), but the head clinician did not believe my story.

I was prepared, but he was not. I then opened up the bag I brought. He asked me "who diagnosed you with this HPPD disorder?" I responded, "Dr. Henry David Abraham, nobel prize winner. I have his phone number and he would be glad to speak with you right now if you want. I have the Associate Director of Substance Abuse at Harvard who you can call? Do you want to see my primary journal articles, my qEEG results, or do you want to see the papers for my nonprofit organization?"

He was taken back. His explaination for my symptoms suddenly seemed ignorant and he realized that this patient (me), was prepared to battle with the doctor about my disorder and I was ready to take it to the level of neurobiology and bringing in heavy weights that I have on speed dial on my phone.

He decided to switch his mind, however probably thought I was somewhat crazy to have so much info on this disorder and I am sure labeled me something because of it.

If I have so much trouble getting my point across and I have these resources, I really hope the best for everyone.

When speaking to a doctor I have a few recommendations:

1. Dress appropriately for the appointment, they pay attention to this. If you dress like a "punk kid" you won't get treated the same as if you dress in a dress shirt and khaki pants.

2. Show that you are educated on your problem, and show that you are not just interested in getting medicated, but interested in solving the problem. If you come across as a drug-seeker... this is a huge strike against you.

3. If you are still having problems with a doctor, e-mail me at [email protected] and I will be happy to help you prepare for an appointment, etc.

OK... i just wanted to throw that in. Wow, my teeth hurt really bad. I can't wait for my dentist appointment. Sorry for the ramblings...

When I get back from the appointment, I can write something more comprehensible.

- David

 

[Tom Servo]

It can't be that bad to have tooth pain; it can't bother you that much.

Yours truely,

An ignorant f--ck.

 

[Tom Servo]

Fingertingle, if your friend knows what being stoned is like, you might start with that. I find this a little easier to describe to people who have had their consciousness/perception altered. The unpleasantness of it is what I find hard to convey. Sometimes people have said "Dude, that sounds awesome (I live in CA), pot is so expensive these days." With them it's better if I use something like being stoned combined with having a nightmare, or being stoned while having a panic attack.

When talking to those who've never had their mind altered, I have to resort to something like "I wake up, but I don't quite stop dreaming". (Sometimes I've wondered if that isn't really what is happening to us.) They'll never completely get it, but that usually get them to say something like "God, how awful!". At that point I figure they at least sort of understand.

 

[Guest]

Hey Fingertingle,

First of all, since I originally come from Saginaw, you know I speak the truth :wink: I do not have dp/dr but my daughter does and I am often in the position of speaking for her. My experiences with other people have changed over time. When this first happened and my 13-year-old was hospitalized our family members were terrific and supportive. Recently, her own grandmother asked, "When is she going to get OVER this? She can't stay freaked out about her childhood forever!" FREAKED OUT??? She said it like my girl had a bee sting or something. I am still p****d!

It's like they lost patience with her "little problem" [their words, not mine]. I have to explain and re-explain. Yes, I still have to make accommodations for her. She can go with you to...the mall, movie, house, whatever...but if she needs to leave five minutes after she gets there I will come get her. Please do not try to persuade her to stay because it will increase her anxiety. I have tried explaining it as a bad acid trip that never ends -- she never "comes down." I, too, have heard, "Cool!" Unbelievable. No, they don't get it. This is a bad acid trip she doesn't want to be on. "Then why did she take acid?" they ask. I didn't say she TOOK acid. I said it's LIKE she took acid. Aaahhh!!! So frustrating!

For a practical explanation, I have used a brief description of dp/dr from the Merck Manual online. It clearly explains the background, symptoms, and treatments. It uses only layman's terms so it may be worth a try with your friends. I have given copies to her teachers and school counselor and by their very supportive reactions I know it helped. We are very lucky in that they are a terrific resource for her. Her teachers cheer her on when she does well and reassure her when she can't. I know having an idea of what she struggles with gave them empathy.

NODID:

I am so glad your story ended happily because I was getting more and more upset about your parents' reaction. I have received some very touching comments from people on this site saying they are glad I am supporting my daughter. It does make me feel good but where are the other parents?

Much like you, most of what I know about dp/dr I learned through my own research. The psychiatrists at the hospital first told me she was schizophrenic, then that she had DID. I told them she had dp/dr. We are now getting what I believe is more capable help but before I found this site I felt as if I was screaming into the wind. It has become difficult for my daughter to communicate so my interaction on this sight gives me deeper understanding of what is happening to her. It's almost eerie in that some posts are word for word what she has said to me.

You are absolutely right about being prepared. I have insisted that she be removed from the substance abuse program (to which she was assigned because she told a doc she smoked pot once) and assigned to a therapist who at the very least specializes in PTSD. I won that round but it has taken 10 months. I was told by one shrink that I didn't need to worry about his decisions regarding Gin's meds because I was "just her mother." I physically stood over him and rattled off all the meds and med combinations I knew were possible, which meds she had taken, how she reacted, and what I expected from him. I'm sure he thought I was a b**** but if I don't advocate for my daughter, who will?

On one level I am so sorry you had to do it alone, but doesn't it also give you strength? In the beginning I felt devastated, weak, depressed, and powerless. But the more I learn the more empowered I feel. I don't have all the answers -- no one does. Not understanding seems to be part of understanding the disorder!!! But I will make sure my daughter gets the best treatment possible. I am trying to empower her as well, reminding her that she knows better than anyone what works best for her. Her distractions may not work all the time but I want her to try what she knows before she comes to me or asks for more meds. I expect BOTH of us to set alarms for her meds. I believe taking back some of her power will lessen her stress. She may not be able to control what is happening to her but she can control how she reacts to it. The best way to describe how I think of my role came (I think) from a country song, "A soft place to fall."

I cannot imagine not believing her, even for an instant. I owe much of my understanding to the kindness of people on this site and their willingness to share with me. I have said before I hope none of you think me a voyer because I do not have the disorder but visit the site and am grateful for your warm welcome.

 

[terri*]

To everyone,

I am always amazed at the strength we can show. I am amazed at the younger people on this site who continue college, their jobs, their lives under such a trying disorder. I also applaude the Mom who is working so hard for her daughter's best interest. Please use all the information and support you can gain from this site. I think it speaks well of the site that you do.

I also used the same phrases...feel like I'm stoned all the time, surreal looking world. I got the blank faces from family, friends and doctors. I got a lot of people who were angry with me for being this way. Angry at me!! Words said by my husband many years ago...That could never happen to me because I would not 'let" it happen. :shock: I will never, ever forget that. We have dealt with it since by me just not discussing it with him. Mr. Compassionate, huh? :?

Anyway, I applaude all of us.

Most sincerely,
terri

 

[Guest]

Hola,
I found that keeping the explination simple seems to work best. One example that almost everyone can associate with is... if you ask ppl if they have ever had the experience of driving someplace and when they get to thier destination, they not remember driving there, you will find that most people will say YES. It's at that time that I tell them that for me, DP is like having this sensation ALL THE TIME!!! I found that with this example, most will finally get some idea of what I am experiencing. So just keep it simple, and this should do the trick. Good Luck, I wish you well.

Tony[/b]

 

[Tom Servo]

I do not have dp/dr but my daughter does...

My biggest fear, much worse than the thought of my own symptoms getting worse, is the fear that I may have passed the tendancy to get this condition to my daughter. As it is I've already been robbed of some of the joy of parenthood due to my emotional numbing. For her to get this as well would be too unfair for me to fathom. She's 20 now; I'll be on pins and needles until she reaches the (relatively) safe age of 25 or so, when the chance of getting dp/dr goes way down. I really feel for you. I'm confident that some sort of treatment, one that actually works, will be found within your daughter's lifetime. Hell, with the research that has been done in the last few years, it may even happen within mine (I'm 46). What a nice thought.

I got a bit off topic, didn't I? My apoligies, fingertingle.