This is my story which i hope helps someone else SUFFERING from this disorder i have come to call “The Devil.”
My name is T and I have been suffering from OCD symptoms since i was a teenager. I am now 23 and i feel my mind is no longer in my control. There is a “monster” in my mind, a parasite of some sort which tells me what to believe, whether i know it is ridiculous or not. If anyone else would think the way i do, i would tell them they were crazy and needed to let it go…easier said that done.
It all started with minor checking rituals…if the doors were locked, the stove was off, etc—obsessions and compulsions which did not upset or control my life at all. I developed an eating disorder in my junior year of high school and was placed on anti-depressants. I have been on them ever since, even though I really don’t believe my “problem” is being fixed or treated with them. When I was about 19 I had an abortion and my regrets and guilt from my actions led me to constantly believe that I needed to be punished and that punishment was unavoidable. I feel that God’s wrath is just around the corner and I am going to die from some horrible, painful, shameful and embarrassing disease that will shatter all my dreams of living happily ever after with a husband and kids and a prosperous career.
Shortly after my abortion I began to fear that I had somehow contracted the HIV virus. I had had sex with only one person in my whole life but I was sure that I had somehow gotten it, even though he lost his virginity to me as well. For three years I had a grey cloud over my head and every time someone mentioned something about being proud of me or how wonderful my future was going to be, I could never enjoy the compliments because I thought, “one day it will all come crashing down because I will find out that I have HIV and my life will be over and everyone will be disappointed in me. I will be a failure and be punished for my evil sin.” After having a PROTECTED sexual encounter with another guy who I dated for a while and was in love with, I thought about his sexual past and it made my OCD / HIV thoughts get stronger. I decided that after 3 years of constant worrying I needed to get tested.
The first time I got tested was one year ago exactly. The results were negative, but the OCD got stronger and stronger. I have been tested five times since then and have forced two people that I had “made out” with and had protected sex with get tested for HIV. All the results were negative, yet I still think I have HIV. I have never participated in ANY activity which “normal” people would consider risky, but in my eyes everything I do is “risky.” I constantly live in fear. AIDS, HIV, AIDS, HIV…it’s a constant terror in my mind…a terror that I think will come true if I don’t constantly worry about it. I NEED to know that I am ok, but every time I get tested and everything seems to be ok, I do something or get myself into some situation which I consider “risky” and my life turns upside down again. Since the HIV virus takes months to be detected, I must suffer for at least 6 months until I get another test to confirm that I am HIV negative. I know this sounds crazy. I feel crazy. My thoughts are getting worse—I think that I got AIDS from toilet seats, my tooth brush touching someone else’s, my boyfriend’s razor…etc…
I am currently waiting until next month to get tested again. I was just tested last month, but I feel that I must get tested again because I had “messed around” with another woman only a few weeks before the test and the virus takes time to be able to be detected. I have researched the virus and learned that what I did was EXTREMELY low risk, and that there has only been one case of female to female contraction. I think I will be the exception to the rule. My obsessions went from reasonable to insane and I am really, really tired of this monster controlling my mind. I am going to law school next month and moving to a new city which I should be really excited about, but my thoughts of impending doom have taken over my mind and my grey cloud has become a black cloud which constantly hangs over my head, pestering me even when I am not consciously thinking about AIDS.
I hate this disorder, and I am starting to hate myself. It’s gotten to the point that I have thought about suicide to solve my problems. I know that I will never actually kill myself, but it scares me to think that here I am worrying that I have AIDS and that I am gonna die, and my solution is to kill myself? STUPID. I hate OCD. I know its OCD. And I cant stop thinking about it, no matter what anyone tells me. I don’t want to suffer in silence anymore. This disorder is so painful, and sometimes I feel like I can’t breathe. I hope that someone else reads this and tells me that they feel similar to me so that I don’t feel psychotic anymore, and can get the strength to fight this. I want to fight. I know it’s the only way to get rid of it. No medicine. No doctor. No parents or friends. Just me. I am the only person who can fix me. I have to fight. I am going to fight…after I get that negative HIV test next month!
8 Responses to “T’s Story”
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Kit on Jul 30 2006 at 9:33 am
Hello T
I understand alot of us do and your not crazy!.. nearly a year ago i felt the same alone.. totaly alone with this devil as you call it.. then i started blogging and through that met other people like me and different from me but all with one thing in common ocd.. it effects us all in different ways.. im 23 too.. my ocd started when i was nine but in honesty id always been a worrying child and a checker.. had to check people were ok that stuff was sfae ect.. the thoughts are what get me now horrible thoughts of things happening to people i love.. and i have to stop that happening by following the compulsions checking that htose people are ok constanly to the extent they do think im nuts!.. theres alot bottled into ocd.. but never feel alone never feel your the only one there ar ethose of us out here you can use as a shoulder.. if you wanna talk or get in touch feel free..
congratulations on law school that is an amazing thing dont let the ocd take that away from you.. iv started university twice and quit twice now.. i let it take it away.. kick it in the ass!
xxkit
Trish on Aug 01 2006 at 11:56 am
From one T to another
I have it too exactly how you described it except I’ve only been tested 3 times. My fear was HIV/AIDs and STDs and yes I too only had one partner and still thought the worst. I even had him get tested and I know what you mean about getting yourself in situations that cause you to freak out and then you scream and shout at yourself 4 putting yourself there in the first place. Yet all we are doing is trying to live our own life by doing the same things as our friends, going out having a laugh, getting druck, meet someone. I am 27, have been suffering this since I first ever had sex. I am now in a relationship and so it doesn’t rear its ugly head that much(having been both tested) - but i’d be lying if I said it was totally away cause just the other day AIDS/HIV came up in a conversation and that panic set in again but I just kept to the fact that I am in a loving relationship been tested and we are both ok so I’m ok. I don’t want to sound patronising, incase your thinking big tickle your in a relationship but I have to be honest with you its being in a relationship that has stopped the thoughts because I know that we are both ok having been tested. B4 that it didn’t matter what doctors or medicine did for me cause at the end of the day it was my thoughts and my appraisal of the thoughts and testing was the only reassurance I could get and its crap to say that my only relief is cause I’m now in a relationship I wish I could offer you more 4 I know that If I became single tomorrow and started seeing other guys it would start all over again. I guess I am trying/hoping to tell you that it will calm down eventually when you meet the love of your life - there is light at the end of the tunnel and so untill then I can only suggest you do what I did - I saw a Cognitive Behavioural Therapist and I take Seroxat (not everyone is a lover of prescription drugs I know, but hey if a pill will help I say take it)
When I went 4 the third time to get tested the doctor said to me “so what if you have it there is nothing you can do about it now!” at first I thought what kind of advice is that but the shitty thing was that he was right - it didn’t offer me any comfort then to hear it and I doubt it offers you any comfort now because the best about it is you have been careful - its the fecking OCD that is doing this to you, but I always think back to that doctor and what he said and how he was so brutally honest with me instead of the pussy footing around that you often get in those places. I don’t know if any of this is helping you T but know this it will get better - you will always have OCD but hopefully with milder intrusive thoughts especially when you finally rid yourself of the big intrusive demon that is HIV/AIDS you sound like a great girl who has relationships so maybe a relationships is what will work for you and you will meet a guy who will get tested for you and you can be together in the knowing that you can have sex and not worry about consequences. I want you to know you can chat to me about this more if you like I’ll be here…..
T on Aug 01 2006 at 5:43 pm
wow, thanks so much for all this reassurance…i have been doing ok lately..just waiting for school to start. The thoughts seem to get worse whenever i have nothing to do. I feel so dumb because i am planning on getting tested again next week..the day before my birthday..i just want to be calm on my bday. (hopefully i will have reason to be). Urrghh..i dont even know why i say that..i am like 95% sure that i dont have HIV, but that 5% is so damn strong that i cant help but listen to it. i also wanted to get tested one more time before i go off to school..just for a little peace of mind. I have told myself, promised myself that this is the last test. I mean for a while, until i get into a commited relationship in which we both get tested before we do ANYTHING! I know that this last test is giving into the compulsion, the monster as my doctor calls it…but i really want it. i hate this. i am on prozac and i think that it is helping me so i am looking forward to increasing my dosage. i’d hate to think that i will be on drugs the rest of my life, but if it helps the OCD, why the hell not??? i’d rather be drugged up and sane than sober and psychotic! thanks again for all the support…please ask the owner of this site for my email so that we can get intouch better. bye for now, T
PrettyHateMachine on Aug 01 2006 at 6:21 pm
So sorry to hear about what you went through after your abortion. I also had an abortion when I was quite young, and went through something similar… not the HIV fears, but I did have this constant sense of impending doom and gloom as the result of shame over it. Most of that seemed to go away when I gave birth to my first child… as if the horrible 2 days of extreme labor and difficult delivery that almost killed me had been my punishment and somehow redeemed me.
I wish you well.
Nita on Aug 28 2006 at 5:08 pm
Dear T
It is only today,after surfing the net to find out about the link between OCD and fear (or, should I say, utter terror)of contracting HIV, that I came accross your posting. It is probably too late and you won’t even see this. Maybe someone else will, and they might not feel so alone. I just had to respond as I know EXACTLY what you are going through. So much of what you said resonated with me perfectly. Right now, I am going through hell in the fear of having caught HIV by doing something stupid(or rather, letting someone else to it to me!). Wait until you hear what I am freaking out about! Most people would think I am totally nuts, but even if there is ANY theoretical risk (no matter HOW small)I plunge into this state of complete terror and can’t do anything else. This whole thing started in February this year when I, for the first time in my life EVER, had unprotected sex with a guy who I didn’t even want to in the first place. Excuse me for being graphic here, but in order for anyone to fully understand where I am coming from, I must tell them the full story. I am actually a gay female who hadn’t had sex for four years when this incident took place. The gentleman concerned wasn’t inside for very long (it was painful) and I refused to let him ejaculate inside me. Then, nightmare of nightmares, exactly three weeks later, I got a swollen gland under my chin and a sore throat. The idea that I had contracted HIV had not crossed my mind until that day. It was then that I began researching seroconversion and the like (you know the drill, I’m sure). I entered a period of horrific terror. The gland went down after a couple of days, but a week later a started getting stinging or burning pains in my lower abdomen which systematically got worse and “spread” to under my arms (all the areas I knew where the concentrations of lymph glands to be). I ran from doctor to doctor, to hospital to hospital like a madwoman. I couldn’t focus on anything else. I even resigned from my job as I thought I was dying anyway. I had an HIV Duo test (tests for P24 antigen as well as antibodies)at 28 days and was told that this test was fairly reliable (I was negative). Naturally, my symptoms, coupled with the fact that it wasn’t 100% reliable,was not good enough. Finally the guy in question, had a test and was negative. Wish he had done so sooner as would had perhaps prevented my from slippering down this slope I now am. He got tested two days after a fantastic doctor aggreed to do a HIV DNA test and antibody test on me at six weeks. They came back negative. I could finally let the thing go. Many doctors had told me that the pains were psychosomatic. I couldn’t believe that SUCH excruciating, non-relenting pain could be psychsomatic. The terror and fear had brought this on (so they said). The pain, however, continued. It was then that I focused on lymphoma (I reckoned that the gland swelling and pain must be related to it). I returned to my native country, thinking I had only a short while to live. My family doctor who I trust, sent me for tests and scans (to reasure me and cover all possibilities) and them put me on anti anxiety medication and antidepressants. With time, the pain DID go away. Just to make sure (even though the previous tests were reliable), I went for one last HIV test at six months and was negative. Wonderful. Due to the weight gain and hair loss associated with my medication, I went off it (feeling as though I really didn’t need it). THEN the crap happened again. At a club a “dodgy” looking guy who, for reasons I don’t want to go into,could possibly have HIV, came up to me, grabbed me by the hands and danced with me. He did this twice and both times held my hands very firmly. Immediately thereafter, I looked at my hands and never saw any blood(the paranoia already playing out). I began to worry about this encounter. Two days later I noticed a tiny cut on my hand and now I am terrified, once again, that I have caught HIV. I have been talking to people, researching the net about the probabilities of having caught HIV. I know that the chances are slim, but I am petrified, constantly thinking of this. I try to put the thoughts out of my mind, but cant. I now have to go through this for the next three months and now, a week and a half after the incident, I have a sore throat. Great. I don’t know what to do. I am angry at myself for not being rude - had I not danced with him, I wouldn’t be in this situation.
So, T, that is a brief synopsis (I have left out plenty detail, believe it or not), of my struggle with anxiety/obsessive thought about contracting HIV.
I know exactly how you feel. I am always able to be positive when it comes to the plights of others in this situation, but not mine. I know that your test came back negative. All will be well with you.
N xxx
fellow OCD sufferer on Sep 02 2006 at 10:35 am
hey T and everyone else who’s been commenting - I suffer from OCD too, and thought I’d share my coping mechanism. I used to contemplate suicide as well, and i felt EXACTLY as if i was losing control over my thoughts because of precisely ‘the devil’ we’re talking about. I was put on prozac, and after 6 weeks (it takes time to work) I felt MUCH better. But I feared that i was buying mental health at the expense of physical health - i was worried that even low dosages over a long period may have adverse effects yet unproven by modern medicine. So i got off the drug, and i felt my mind slowly unravel, seam by seam. BUT i found the most effective way, I feel, to combat the disease. If i may generalise based on my experience, it’s not through telling yourself repreatedly that it’s irrational, because that itself can become a compulsion; it’s not through giving in for temporary relief; its’ through EXPOSURE. you need to ENVISION totally and without reservation in your mind the worst and most abhorrent situations which involve you contracting AIDS. for me, i feared contamination - it was so bad at one point, that i couldn’t talk to my loved ones, because i though that would contaminate them. i couldnt pray, i had lurid sexual images, and swear words spring to mind whenever I tried to think of anything religious. I spent two hours lying in bed, running in my mind all the ‘contaminants’, squirming in disgust and discomfort. It was horrible. But after that, I found the thoughts didn’t bother me anymore. Almost as if my brain could say ‘been there, done that’. And this technique of exposure is corroborated through research, it’s just not something a lot of behaviour therapists have caught on to yet. So specifically, I recommend making yourself NOT go for the test, making yourself touch toilet seats you think are contaminated, twirling the toothbrush all over your mouth if you think it is contaminated, making yourself BEAR with the discomfort without surrendering to compulsion. Go as far as you can without putting yourself at risk; kiss the hand of an AIDS patient if you can (it’s safe, no fluid transfer). i still suffer from OCD, i can’t do exams sometimes, my spectacles feel permanently imbalanced, and each adjustment begs another one. It’s like how giving in and going for one HIV test, makes you more beholden to the disease. I still suffer relapses from time to time, ‘the devil’ is insidious and takes you in your weakest moments. But I believe that we can fight it… and we will. Good luck with exposure therapy. Remember that there are so many OCD sufferers out there who are put through this daily torment - we know your suffering, we are with you, we love you, and we will pull through this.
Sunita on Sep 21 2006 at 7:58 pm
Hi,
I almost am going through a very tough period of ocd, using lexapro for it but not smuch help with it though I am not obessing as much, but still obbssesing. The only way to control it would be to distract yourself even though there is doubt gnawing away at the back of your head, though this does not help us overcome the fear it will atleast let me live and enjoy life a little more. The best thing for us to remember is that this is not the real us, just the devil trying to get a hold of us. We all are fighters, somehow God seems to bestow the strength needed to live with ocd and not be destroyed by it. Wish me luck and wish you all luck
Kendra on Feb 12 2008 at 12:24 am
Hey. Im only 17. But reading this made me want to cry. I also suffer from OCD. But instead of always having to do things like I used to I now have obsessive thoughts. I have to think about certain things everyday over and over and over again. I have to ask myself if i love my bf of a year and a half even though I know I do. i have to ask myself if i’m a lesbian and I know I’m not.
This really helped me.
Thank you.