OCD and Fear of HIV

[Jozie77]

Hi All
I am so pleased that I have found this forum, as I feel quite alone and have no-one really to chat to about what I go through except my therapist, but often I think that she is just appeasing me.

My story is that I think that I have had ocd in some form or another for most of my life.  When I was a teenager I suffered from anorexia, which I have heard is a form or an expression of ocd.  And I have always basically been paranoid and very much always assuming the worst.

The latest obsession that I have is HIV.  I had protected sex with a friend of mine over a year ago and am completely convinced that I have now been infected with HIV.  The friend has reassured me time and time again that he is negative and plus we used protection.  But everynow and then my ocd flares up and nothing that anyone says can convince me otherwise.  The friend thinks that I am a complete lunatic and we hardly speak to each other anymore as a result of all this.

This isn't the first time I have thought I have had HIV, in the past I have worried about this and despite negative tests I still remained convinced that I have HIV.

Is there anyone out there who can relate to me?  I would love to hear from you.

Please if you are going to tell me to just have an hiv test, don't respond as even though I know is is the most rational thing to do, I can't.

Thanks

[RedSoxFan07]

I can totally related to what you are going through.  I am there right now.  I am struggling with a one time low risk activity and my OCD is driving me crazy.   I have been going through episodes like this for 15 + years.   I have really good times and really bad times.  HIV worrying has been the focus of it over the past three.   I feel your pain.  Believe me.  

[Jozie77]

It is so nice to know that I am not alone and not a lunatic as well.  I am sorry though that you have to go through it, it is terrible.

I just hate the fact that my mind can't stop imagining the worst case scenario's.  The last 4 or 5 years for me have always been about HIV.  Anytime something happens or there is change in my life my OCD flares up and I almost getting paralysed with fear.

[RedSoxFan07]

Have you tried and type of relaxation CD's?   I have been using this one that has really helped.  I dont have it with me or I would give you the name.   It goes through the process of relaxing and getting the unwanted thoughts out of your head.   The more you try to not think about something the more you do.  You need to learn how to relax when these episodes happen and realize it only negative thoughts.  I know its not that easy and I know they can control you.  I have not by any means perfected this process and more times than not I fall into the OCD, but it does help.  

Just like myself when anxiety or stress enter your life your OCD kicks up.  I have the same issues with HIV.  Except I get tested.  Last year I probably got 4 tests.  Well I hope I am some help to you.  Feel free to keep in contact.

[Jozie77]

Well you are a lot braver than me - at least you get tested.  I am too scared.  Even though the sex was protected and the guy promises and swears on his life that he is negative I am convinced that I am positive.

It is crazy I know all about hiv and what a fragile virus it is etc etc and I love to discuss it.  

I did get tested before this incident, but even then I still don't fully trust the results - is this how you feel?

[blink1147]

wow i love this site! o knew i would be able to relate to the people on here, but this is incredible. Probably my second cause of panic since I first developed OCD was that I had hiv and whenever i would feel the slightest discomfort i would freak out. Does anyone else worry about heart attacks, cancer, botulism, meningitis, or that there is some form of toxic substance in everything they come in contact with? Not just germs, I'm talking botulism, cocaine, acid, the powerful stuff. But thanx everyone, just knowing that it's normal to be so terrified of this makes me feel more safe.

[Jozie77]

I know what you mean, when I am not focusing on HIV I am convinced I have cervical cancer or something else equally as horrible.

I even sometimes think that I have had sex with someone when in reality I know that I haven't - crazy hey?

I also find it helpful to know others out there like me.

Do you have any hiv tests?

[stressball]

I totally understand and EMPATHIZE with all of you.  I have been struggling with this for about 5 years.  Had a risky (well in my insane analytical opinion) experience with a guy.  Got sick afterword...I mean...weird sick.  Vaginal ulcers, fever, etc.  They tested me for everything...herpes, syphillis, EVERYTHING.  EVERYTHING was negative.  Never got an answer for what it was, even after multiple doctors and tests.  Convinced myself it was HIV.  Have had (over the past 5 years) 5 negative HIV tests and still can't let it go.  What the HECK is wrong with me?????  Convinced myself I had a rare form that couldn't be identified by current testing (but, is only ever found in West Africans) ridiculous huh?  I have my wedding coming up in 6 months and am so scared I'm not going to be able to enjoy it.

Sad.

[ajf00529]

I hear you. I had a similar experience where I had protected sex with a girl and I worried about it for a year, despite three negative tests. I kept thinking that maybe the lab made a mistake or whatever. Now recently the OCD has been flairing up again. I can't even shake peoples hands or touch doorknobs without thinking about it. The other day I was doing a project for school that invovlved interviewing people. So I talk to this homeless looking guy and he hands me is newspaper so he could fill out a interview sheet for me. Ever since I have been terrified that there might have been blood on the paper and it might have gotten in a cut. At this point everyone thinks im nuts and even im starting to think that. I would love to talk to somebody about this so feel free

[Crosby12345]

Everyone who has posted in this forum thus far needs to RELAX.  I can totally empathize with all of you as I too suffer from this seemingly debilitating mental disorder but understand that you DON'T have HIV; you have OCD.

First of all, HIV is EXTREMELY difficult to contract.  Unless you're having daily encounters with prostitutes and using IV drugs, you're 99.999% fine.  If the situations that you have all described were likely paths of transmission, every college campus in America would be completely full of HIV+ students.  Be safe, but don't fret.

Secondly, I understand how these crazy, irrational thoughts defy logic and become very convincing.  I suffer from OCD, and my worry is also HIV despite the fact that I have never taken part in any sort of risky activity.  Touching doorknobs, lifting weights, and using public computers are just three of the various daily activities that have consumed my mind with the thought that I've contracted HIV.  Part of me understands that this notion is absolutely absurd, but the OCD can finds of justifying these irrational truths into my mind.

I have battled this paranoia for a nearly a year now, and I have seen noticeable improvements.  I have tried several meds (SSRI's) but found them to be detrimental by actually exaggerating my OCD thoughts.  I have discovered solace in making sure I'm well rested, seeking therapy and educating myself about HIV transmission routes.

PLEASE realize that you are not the only one suffering from these thoughts.  You need to force yourself to fulfill an enjoyable and typical lifestyle; do not change it because you have a false notion that you have HIV and that you may spread it to someone else.  YOU ARE FINE, just like the majority of your friends, family, etc..  It is when you discontinue these activities and dwell more, that OCD garners more momentum.  That is the fuel to its fire.

You can't go through life with a certain craze because everything we do involves some sort of risk.  I'm continually telling myself that the chances of getting killed in a car wreck are 1000000 more plausible than the chance of contracting HIV through doorknobs, weights, etc.

I know this may seem very frightening but take a deep breath and realize that you're not alone.  You have OCD and nobody is going to get sick from it.  I understand how awful these thoughts can be though and I am willing to answer questions that you may have.  I am simply a law student and thus obviously am far less knowledgeable than a therapist or counselor, but I have spent a lot of time studying and becoming acclimated with the symptoms of OCD (specifically in dealing with HIV).  Enjoy life, you may get hit by lightening tomorrow ;-)

[ajf00529]

Does anybody have any suggestions on how to get rid of anxiety provoking thoughts? I get these thoughts and I literally can't get rid of them until  get an hiv test done. I hate living in fear all the time

[Crosby12345]

You need to speak with a counselor and begin undergoing CBT, unfortunately it is unlikely that these thoughts will go away on their own.  An SSRI may be prescribed in the meantime to help you cope.  Good luck!

[feelinnuts]

Hi All, I am glad there are others like me here. I recently strayed outside my mariage and it has killed me ever since. I thought I had HIV from a very very low risk scenario and it drove me nuts for the last 2 months. I went in for an HIV test at 6 weeks and received a negative result but liek the poster above I felt like the nurse wanted to infect me for my horrible choice in life that I made. I started to analyze everything as she left the room before drawing my blood and all the needle were in the room, I keep asking myself why did she leave the room. Maybe she has a needle in the back with blood on it etc. I ddin not watch the needle as I am terrified and of course now it is lingering in my head every second of that 2 minutes (it seems liek an eternity) and analyzing everything with what ifs. My wife things I am over the top ( I have told her everything as I wanted to work on our marriage as we needed it).

DOes this seem like OCD? My doctor has put me on Cipralex and it has helped and I am booked to see a cousleor in 2 weeks. I am hoping these are just obsesive thoughts and when I tell anyone they think I am nuts.

[youngbuck]

Thank god, I am not alone. I had an occupational exposure with blood and open wound. It cuased me a lot of stress as my wife was pregnannt and we just had a little girl a few weeks ago. I was so scare of ever passing anything on to them that I became an anxiety and OCD paranoid person looking up absilutely everything. I felt like it was my fault this happened and was very guilty (to feelinnuts, guilt was proably a huge factor in your scenario above as well). I recently went to get tested at the 7 week mark and got in a little spat with the tester as she didnt want to do it ans said to wait three months. Finally she agreed and left the room as well. I started thinking over and over again why did she leave the room, maybe she had some blood in the back and she would show me. I know it is irrational to think this way but I cant stop it. I am also on an SSRI an have cousneling this week for the first time. Does this sound like OCD?

[Sambina_88]

Honey I feel ya, I really do. It doesn't matter how many tests you get done, something so small happens that always makes you think you got it. I've had OCD all my life, I mainly used to be obsessed with my face and taking hours to get ready, but now it's escalated to germs, rituals, intrusive thoughts, etc...But I've had intrusive thoughts all my life. Anyway, I really do know how you feel. It's horrible to wake up everyday and think that you have some horrible infectious illness. Like me, if I get a cut or something, I'm afraid that it'll get on someone and I'll infect them, or even if one of my family members gets cut and blood gets near me, I freak out. Even though I know they don't have anything, my OCD is telling me "Everyone and everything is infectious. Stay away!" I've already had an HIV test because I got cut at a manicurists, it was negative. I was good for about 30 something days, then when I went to a doctor's office and had to get my blood drawn, I noticed they didn't have them in packages like I'm used to at the lab. They were capped, and I even asked if they use clean needles, the nurses laughed at me and made sarcastic jokes (like "oh yeah, I stick everybody then I stick myself"). I noticed her throw away the needle though, but I'm still paranoid. So now I'm counting the months until I can have another test done.

Sorry to go on and on, but I know how painful and annoying it is to be in fear of EVERYTHING. I just hope that everyone suffering from this is able to overcome it and be happy again. It's good to be cautious, but when you have OCD, being cautious turns into a 24 hour job.

Good luck and I hope you get better. I'll be sure to pray for you and everyone else suffering from OCD.

[nodamidis]

I know exactly how all of you that suffer from this particular form of OCD feel, but I am here to tell you that you can get it under control.  Back in the early '90s, I woke up one day with a sore throat and instantly concluded that I had AIDS.  I had test after test after test.  All were negative, but I didn't believe the results. My doctor referred me to a psychologist.  It took me a couple of years (!) talking to the therapist before I could admit that I was convinced I had AIDS.  I knew my thoughts were irrational but was ashamed that I couldn't control them.  Once I admitted it though, she immediately knew that I had OCD and we began the long journey toward recovery.  Between cognitive-behavioral therapy and medication, the OCD began to subside.  Now, 17 years later, I still sometimes think I have AIDS, but the thoughts are fleeting and they don't stick in my head for more than a minute or so.  I still take medication (Lexapro and Remeron) and I still see a therapist, but all of that is more for maintenance than anything else.  No one would ever know that I had OCD.  Hang in there.  Get help.  And start working toward your recovery.  It can be done.

[dizam]

okay i dont mean to be a really big jerk... you guys need to CHILL the F*** out =| if you use condoms and they dont break youre 100% protected from hiv. a negative test result after 3 months is conclusive meaning you dont have HIV. im going thruogh the same thing. i dont have ocd though. im just really paranoid.

try meditation it REALLY helps!

[Jadeexx]

I can completely relate to what your saying, I am sometimes crippled by the fear that i have HIV or AIDS or Cancer or just about any other life threatening illness.  A lot of people think I'm a Hypochondriac, but its actually my OCD that causes this.  And the only thing worse than the thought of having these illnesses is going to get tested for them.  I get dizzy just thinking about the absolute panic and fear and worrying I would feel waiting for the results.  I know that you can't just rationalise the fear on your own - and even clear test results will be ineffective in the long-term without treatment for your anxieties.  OCD is an illness that won't disappear by sheer will alone.  Also explain to your friend that you don't mean to cause offense, and that your fears are very real to you that are caused by a condition you have, not as a result of anything to do with him or you not trusting him.
  The best thing to do is to go to your doctor and explain the distress your fears are causing you.  Ask to see a therapist or counsellor to help you deal with your worries.

[robkfromphilly]

I know exactly what you're all going through. I've had 'No Risk' after 'No Risk' situaiton, yet the thought never seems to leave my mind, and I experience paralyzing panic attacks, sometimes even playing games with my body, to the point where I feel psychotic. Best thing to do guys and gals, stay OFF the internet. You cannot self-diagnose. And many sites out there are full of misleading information, that tortures the mind. Right now, I'm going through a heavy OCD phase about HIV, after yes, a No Risk situation, which I put myself in unfortunately. Basically, one compulsion leading into a very harsh obsession of the mind. I've just started Zoloft, and soon I'll be getting CBT, so hopefully that helps. Keep your heads up, and OFF the internet sites.

[robkfromphilly]

Yeah, its possible you have OCD, but certainly not a bad thing. Very treatable. My advice, I too smoked a massive amount of pot, and in a way believe it has contributed to my anxiety and OCD issues in my current state.

[robkfromphilly]

I myself have/had a ZERO  risk exposure, and trouble coping about it. Seems like the internet is a scary place is misinterpretations, I trust in MEDHELP and Aidsmeds, and not the rest of the conservative web, I think a lot of people might benefit from that as well. But all in all, I'd like to help as best as I can with anyone struggling with this phobia.

[anxiouslauz]

It's so surprising to see that so many people have my problem!
I didn't have this fear at all until my grandad dies and the shock provoked my ocd (which i had badly when i was younger) to flare up again and i went crazy obsessing over hiv.  I got tested and it came back negative but it hasn't stopped me worrying.  I now get fear that someone may have stolen my toothbrush and bled on it and I get scared if I kiss somebody about there being blood present.  I can't let things go.  I just google everything and drive myself mad.  I've read that there has been 1 case of hiv transmission through kissing and now I'm completely convinced that I'm going to be the second!  It's really horrible!

[robkfromphilly]

Stay off google (theres so much false information out there) Places like medhelp and aidsmeds know the fact. By the way that Kissing transmission was disproved, therefore leaving NO DOCUMENTED CASES. But I know exactly where you're coming from, I had that very same 'no-risk' before, along with my new 'no-risk.' It's harsh.

[helpingyou]

I am so glad to find a site like this. I've been in truamatic episodes of what I think is OCD for I can't really take off the HIV thing out of my head, since March, I will go to sleep thinking about HIV and when I wake up, it is also the first thing on my mind. I had tests March3 and May12 which covered the October2007 (beat the 3 month window period) possible risk i had. both tests were negative. However, i still find some other excuses to prove that I am positive and would want to take another tests. my parents are getting mad at me for torturing myself. I am consideirng getting psych help but sometimes, I am able to control now my fears. the www.thebody.com site is very helpful in staying away with my OCD, read Dr. Robert Frascino. he is the best.

ANOTHER BEST technique that I am doing is this mindset, "at one point in time, we are all going to die anyway one way or another, so why excessively worry about illnesses while we are still alive?" I will admit that i still worry about HIV everyday but not as excessive as 3 months ago. still, this mindset adds more courage to me. if you need someone to talk to, just message me. we can get through this together :)

[midge40]

sounds to me that u guys are more scared of being scared about HIV, rather than actually having the disease itself, ie u fear the fear. OCD is far more debilitating that HIV. my friend has hiv, and he is living his life and is quite happy - great job, friends, partner, whereas u guys can hardly function. its tragically ironic. im not having a go, coz i been in the same position as u.