How open are you about HPPD?

[Matt]

Another topic I'm curious about...  I've had this shit for 4 years now and have just told my parents.  Thought it would be a weight off my shoulders, which I guess in some ways it was, but I feel like my mom thinks I'm exaggerating just general anxiety.  My stepdad on the other hand, I think can sympathize a little more since he did a bunch of acid back in the day and knows people who've "changed" from it (both good and bad).  But I just don't think they get how much of a burden on your life HPPD really is.  Anyway, one good thing that came out of it is they're going to help out with the cost of seeing a neruologist and meds if I'm perscribed them.

 

Other than that (and doctors), I've told some close friends, but left out the part about DP/DR and that this shit majorly impacts my life.  One of my best friends has it, and in fact his visuals are much more pronounced than mine, but the lucky bastard doesn't have a hint of anixiety or DP/DR from it. 

 

I guess my main fear about being more open with friends is that they'll look at me as some sort of drug casualty, which in fact I am.  By not telling people, I felt as if I could more easily deny this fact to myself, but it is what it is and there's denying it anymore.  I do feel like I should be more open with a few close friends, so if I start acting strange and am thrown into a panic for no apparent reason, at least someone will somewhat understand and cover for me.  But another fear in telling even a few close friends is that word will get out in my larger circle and I'll be seen as the crazy dude who did way too many drugs... 

 

Do you guys have any particular positive / negative experiences from telling parents, friends, etc.. about your HPPD or do you hide it from everybody?

[Shadowplay]

Another topic I'm curious about...  I've had this shit for 4 years now and have just told my parents.  Thought it would be a weight off my shoulders, which I guess in some ways it was, but I feel like my mom thinks I'm exaggerating just general anxiety.  My stepdad on the other hand, I think can sympathize a little more since he did a bunch of acid back in the day and knows people who've "changed" from it (both good and bad).  But I just don't think they get how much of a burden on your life HPPD really is.  Anyway, one good thing that came out of it is they're going to help out with the cost of seeing a neruologist and meds if I'm perscribed them.

 

Other than that (and doctors), I've told some close friends, but left out the part about DP/DR and that this shit majorly impacts my life.  One of my best friends has it, and in fact his visuals are much more pronounced than mine, but the lucky bastard doesn't have a hint of anixiety or DP/DR from it. 

 

I guess my main fear about being more open with friends is that they'll look at me as some sort of drug casualty, which in fact I am.  By not telling people, I felt as if I could more easily deny this fact to myself, but it is what it is and there's denying it anymore.  I do feel like I should be more open with a few close friends, so if I start acting strange and am thrown into a panic for no apparent reason, at least someone will somewhat understand and cover for me.  But another fear in telling even a few close friends is that word will get out in my larger circle and I'll be seen as the crazy dude who did way too many drugs... 

 

Do you guys have any particular positive / negative experiences from telling parents, friends, etc.. about your HPPD or do you hide it from everybody?

 

I'm pretty much open with everyone close to me to know that I got a perception disorder that comes with visual distortions and that I do feel mentally effected by it as well. There no need to clarify that I might have got these issues from drugs. What's that going to do for you? We are living in a judgemental society and I'm not lying about it, I'm just not going into unecessary details on what could have caused it. I got great support from friends and they are really understanding regarding my condition. I've mentioned sometime that it could been caused by migraines, headtrauma or drugs, which is true. But noone seems to be interested in the cause, they just want me to get better.

The social life is what's worth living for so it's important to be honest to those you love.

 

You can compare it to if anyone close to you get cancer. Your not gonna ask what it was induced from. Or if you get it and you have been smoking cigarettes for your whole life, you wouldn't drop it as nicotine-induced cancer. Or if you get diabetes, you wouldn't open up about sugar to everyone either. I don't believe in random numbers or bad luck. You get everything for a reason, caused by something else. We don't even know if it's HPPD or just drug-induced Visual Snow. We don't have to blame the drugs themselves.

[leelalala]

I talked about my HPPD with two of my professors at university (didn't mention the drugs that triggered it though), because I couldn't stand the projectors that were used in classes. They were very understanding, and allowed me to leave class whenever it was too much for me, or gave me the videos to watch on my own pc.

One of them, who was teaching about contemporary arts and a painter herself, was actually fascinated with my visual symptoms, mentioned that she had something like that for a while when she was younger.

 

I told my parents about it before I knew that it was HPPD because I wanted to see a neurologist, but I didn't talk much about it after I was certain that it was caused by drugs.  Probably they're still thinking that it was some sort of unexplainable epilepsy kinda thing, which was cured by the antiepileptics I was taking... They do know that I used drugs, but they've never showed the slightest bit of effort to understand what was going on. So my experience was too neutral with them as always...

 

The majority of my friends do a lot more drugs compared to me, so I can be open with them. sort of... most of the people I told about it said that I was just thinking too much, or stuff like that. I guess I have to make new friends...

[WuWei]

My family, close friends, psychiatrist and therapist know.  I've told a couple of other random people and no one seems to be too shocked by it and no one has brought it up again in conversation.  Apparently it's not as big a deal to them as it is to me.  Hahaha.

 

I do think you have to be careful who you tell as it could be grist for the rumor mill if someone has an agenda with you for whatever reason.  Especially be careful in job related areas.  I wouldn't tell anyone there.  People that have experimented with drugs would probably be more understanding- but some people might view you as some sort of burn out out of ignorance.

 

Also, I don't think you're a victim of the drug scene or a cautionary tale.  I would get that out of my head.  You're not institutionalized and you're able to contribute to society and people's lives without being too much of a burden.  Those are what they call redeeming qualities.    Everyone has stuff they deal with... this is our thing.  Or one of our things... lol.