Alison’s Story

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I am a 26 year old Mother of 2. Married. Employed. Have a rather comfortable life. If only my OCD would go away!

I remember as a child having panic attacks, never knowing what they were. I remember being overwhelmed by guilt if I did anything wrong. I hated people being mad at me. But OCD never “really” affected my life until after the birth of my second child. It was like I woke up one morning & “BOOM” OCD knocked me on my butt! I totally convinced myself that I had AIDS. Even though I had just been tested @ the beginning of my pregnancy & tested negative. I hadn’t been with anyone but my husband & we sure aren’t regular users of intravenous drugs. Somehow, I worked up the nerve to have another HIV test – which of course was also negative.

For a while after my 3rd test came back negative I didn’t obsess over AIDS, I obsessed over dying period. I was afraid to drive alone, afraid to go to sleep, so on & so on. Then it all went back to HIV again. I can’t even stand to hear or see that word. That was 4 years ago & almost every day since then I still fight the ocd/hiv battle. I go over & over in my head how the tests (all 3) were wrong, they got my results mixed up with someone else’s, maybe it didn’t show up.. you all probably know the whole “doubting” routine. I spend half the time trying to rationalize out how it’s not possible for me to have AIDS & the other half convincing myself that I do. The anxiety for me is much worse when someone in my family gets sick. If one of my children throws up or gets an infection I convince myself that I gave them AIDS. I hate it!! It’s a never ending battle. If my husband has a loose bowel movement, or I think I notice him losing weight I freak out. I check us all for signs of swollen glands. My husband gets so aggravated with me. I wish I could explain it to him. He doesn’t understand how I can’t just stop thinking about being sick. But I don’t know how to make him understand. I once convinced myself that we all had the symptoms of AIDS. I confided in my sister & told her how my fear. I also went on to tell her that I think I could get over the fear of AIDS if we didn’t have the symptoms (I convinced myself we had the symptoms- diarrhea, loss of weight-probably caused by my anxiety, my son had a knot in his neck, a spot on his leg which I was sure was a lesion- but really ended up being ringworm, my daughter threw up every time she got a cold- I convinced myself these were signs of AIDS). Anyway, she went on to give me a good example of how I was feeling. It’s like a child who is convinced there is a monster in his closet. He hears a noise & oh it’s that darn monster. Or he sees a shadow & oh it’s that monster again! None of those things really are that monster. That’s how she told me to look at all our “so-called symptoms”. It helped for a while & I still go back to that saying a lot. I know I have OCD. I have always counted or added in my head over & over again. I never knew why, but now I know that is a compulsion. And I’ve noticed when my thought starts to bring a lot of anxiety I’ll start the counting. Sometimes I convince myself that I don’t & “know” that my thinking of HIV all the time has to be why we have it or will get it. I know it sounds crazy & I’m so embarrassed to tell people this about myself. I am a smart person, hold down a good job, athletic, funny & pretty normal (to the outer eye) I have to admit that there has been times when my OCD was so severe I would call in sick from work, or stay in bed all day. My doctor knows how I feed about the HIV/AIDS issue & has reassured me that there is almost no way for us to have it. It’s the “almost & what ifs” that get me. Some days I feel like I can beat this thing. There has actually been a period of 12 months I did really well. I wasn’t even taking meds. But then it all came back. Right now I am back taking Lexapro & it seems to do okay. I just wish there was something to make the OCD go away & I could live a worry free, fearless life. I’ll get there one day- we all will. I appreciate this sight. It’s made me realize that I am not alone.


Comments

Alison’s Story — 39 Comments

  1. Alison: I had the same thing happen to me in the early 90s. I came down with a cold and can remember waking up with a scratchy throat. Instead of thinking, “Oh, I have a cold,” I sat straight up in bed and thought “Oh my God, I have AIDS.” I had test after test after test. All results were negative, but I always managed to convince myself that I was one of a handful of people who test negative even though they have the virus. I saw a psychologist for depression but was afraid to mention my AIDS obsession for a couple of years. During that time, I very nearly lost my job because I spent every waking moment thinking about AIDS, calling AIDS hotlines generally worrying that I would somehow infect my loved ones. Finally, I told my therapist and started on the long road to recovery. For me, that involved cognitive behavioral therapy and medication (Effexor and Klonopin). It took a long time, but the obsessive thoughts finally went away and have stayed away for over eight years. Eventually, the Effexor stopped working and I had to switch to a new combination of meds–Lexapro and Remeron–but I never had a relapse of the AIDS thoughts. I look back on it now and can’t believe how sick I was. I survived though and so can you. Get yourself a good therapist, preferably one who specializes in OCD, and keep taking the meds. Above, confide in your loved ones and accept the support that they can provide you.

  2. Couldn’t agree more, Barbara.

    On a personal note, is reassuring to come across other people who have been hit by OCD out-of-the-blue at a later stage of life. So many people seem to suffer with it from an early age that I’ve felt a little worried that mine never hit me until the age of 23. I guess, as with all sufferers, I’m just happy to know I’m not alone – though sad for anyone else who suffers from this terrible illness.

    Matty

  3. Thank you Barbara for your comment. It’s comforting to know that someone has dealt with the same issues I have & gotten through it. I’ve actually had a pretty good week. Last week was horrible!! Does anyone know why the OCD person focuses on AIDS & not other diseases? Just wondering. I hope everyone is well!!

    Thanks Again,
    “Alison”

  4. I have often wondered about that too. I will ask my therapist about it when I see her next week–yes, although I have been OCD free for several years now, I still see a therapist periodically, mainly because my biggest fear is that something will happen some day to trigger the OCD again, and I don’t want to go through that again. Anyway, in answer to your question, my guess is that AIDS has a stigma to it that other diseases don’t have and also, because it’s a relatively new disease, the media has focused on it much more intensely than other diseases. I have never been all that focused on health issues, which is why the all-consuming obsession with AIDS really threw me for a loop. It’s important for you to understand that OCD is an anxiety disorder and I have been told by numerous psychiatrists and psychologists that OCD manifesting itself through an irrational fear of AIDS has become very common. It’s the quintissential anxiety-provoking disease.

    One critical factor in being able to overcome our particular form of OCD is desensitization. Just hearing the word AIDS would send me into a complete panic, so I tried to avoid it by turning off the TV and refusing to read news stories about it. That was the worst thing I could have done. In therapy, the goal is to talk about AIDS and rate on a scale of 1-10 the degree of anxiety it causes. I know it sounds antithetical to overcoming it, but it works. I would think that talking about it here or to an understanding family member or friend would help to some degree.

    If you would like to talk about it more, I gave the Incertus site owner permission to give you my e-mail address.

  5. Well, it’s just my guess, but I would say hiv/aids is pretty much the perfect disease for OCD to focus on. What with all the early manic media panic about it and the long incubation period and the slow lethality of it all.

    That said, my OCD is primarily contamination type and AIDS, while in my hierarchy of things to be concerned about it, falls pretty far down the list. Our individual OCD symptoms are focused on things that are important to us or cause us anxiety or would cause us anxiety even if we didn’t have OCD. And thinking about getting AIDS gives most folks a bit of concern.

    Though I have to admit sometimes my OCD comes up with something completely out of left field. I once went through a period of obsessing about Hansens disease. Funny now but not then.

  6. Question……….
    I have been reading “Brain Lock” & started following the 4 steps to recovery. The first step says to relabel your intrusive thoughts as OCD & basically dismiss them as a sickness. My problem is I’m questioning the fact that I do have OCD. See, I’m not afraid of doorknobs & passing bandaids on the ground & don’t wash my hands until they bleed. I’m precautios – stay away from needles & stuff like that. I find proof that me & my family have HIV through symptoms-
    Rashes, upset stomach, colds, infections, etc. The only compulsion I have is counting & I’ve always counted. Can someone help?

  7. I have suffered with ocd since I was about 17 years old. I am now 30. IT is an on going battle that effects me every minute of the day. It is very much a secret, beside’s my family who has suffered with me. I am affraid to be alone bacause of the thoughts that I have. For example, affraid that I will let some strange man in and be raped. That I will find a dirty HIV infected needle on the street and infect my child and family, or their food. I write notes constantly to “proove” to myself that I haven’t done anything wrong. Visions of hurting my loved ones as well as myself. I would love a cure and hopefully we will all be saved. Heather

  8. I’m going through the same thing right now. I just had a baby two and a half months ago, and one month ago I started thinking I had hiv, because of things I had done years ago. I had taken a test before I got pregnant which was negative, and I didn’t think about it during my pregnancy, but suddenly one day I thought I should check the false negative rate of the test I had and found that a tiny percentage would test falsely negative, and became convinced that I could be part of that tiny percent and that to protect my family I had to have another test right away in case i hadn’t infected them yet and could keep from doing so, so I had another one, which was negative, but read that the two different types of antibody tests can sometimes identify people differently, so I went and got my blood drawn for the other test. however, and this is the terrible part for me right now, i became convinced that I had then gotten hiv from the phlebotomist or the needle, because he was gay and I was convinced he had hiv and he moved after he took the cap off the needle and he could have pricked himself, even though i saw the needle and he didn’t. i also thought that he might have been plotting to infect someone with hiv because of bitterness at having it himself, or that he reused an old needle that had hiv in it, because it came with a cap on it but not in plastic wrap, which I know is how they often store them but I can’t help thinking “what if?” and I can never know for sure that it was new. I finally confessed to my husband who tells me all these thoughts are absolutely unreasonable and that that doesn’t happen, but driving back from taking the test I felt so strongly that it did, because of being unlucky or being guilty in my past behavior when I was younger or because there were several things that i couldn’t be absolutely sure about, such as the needle. My thoughts got even more terrifying when I got sore muscles and a sore throat and swollen lymph glands in my neck a few days after getting my blood drawn, even though lots of people i know and in the city i live in were getting the same thing. I’m seeing an OCD specialist now but I’ve only seen him twice and this is very overwhelming. I’m so scared nursing my baby sometimes, and I try to give him formula but he won’t take it. It’s helpful to see other people’s experiences. I keep thinking, that one month ago I was on cloud 9, and now i feel broken to pieces. I really hope that i see the “unreasonableness” of my fears soon.

  9. Hi everyone,
    It is Shirley. Christine published my poems a few months back.
    Or maybe more, time has no meaning to me, except it rolls by so
    very fast. I am a chronic sufferer of OCD depression 30 years or more.
    Yes Aids is one you focus on. Why because it is just about the worse
    thing you can get. OK there is cancer but not so much stigma to getting cancer is there! There is hyperchondria OCD. As well as
    religious OCD. OCD is an unfair opponent, it always hits the place
    where it will hurt most. If you are religious then it is something
    blasphemeous that torments you. Or if you worry obsessively it is usually about someone you love so much. And the obsessions are about your loved one.
    After reading Dr Jeffrey Swartze book “Brain Lock” I am getting the
    measure of my OCD at long last. Also I feel mine is starting to go
    into remission. At the ripe old age of 65. All my young years were
    spent tormented by it. The cleanliness OCD. Couldn’t touch anything with out washing my hands 7 times. Then each week I would be at
    the doctors telling him of my cancer. Next week I would have some
    other terminal disease. Two years ago I prayed for death each night.
    Now I am on the up at last. I am able to say to those obsessive thoughts “So what” Ask Gods forgiveness if I am to blame for thoughts I get but do not want. So from now on I put my trust In The Good Lord. He does understand I promise you, and unlike a phsyco thereapist once said to me. They are your thoughts Shirley.
    That was a lie of the devil. An old Christian Deacon in my church
    said to me. Thoughts are around about you in the air, they float above your head, sometimes they touch your mind, but they only become thoughts if you encourage them. Just let them roll by like birds in the air. They are not yours. You are not the creator of them, or anything else that is wicked. Now I can live better. If I get the urge to bath after a bad thought, I sit there and fight it, and the longer I can sit there an ignore it the easier it becomes. And then sometimes after a long wait,20 mins say my mind adjusts and I think so what I dont want the thought it is not what I believe, and 7 times out of ten. I don’t need yet another bath.
    My mind power is improving, and I can think myself out of things.
    You can too. It is mind over matter, and I promise you it works.
    Why didn’t I think this way twenty odd years ago. Better late than never. I had every drug there is, even ECT. And that was the only
    thing that helped. I was referred to the Geffrey Knight hospital for
    a loucotomy. By the Grace of Him who loves me I never went ahead.
    And doctors have said it was a good job I didn’t for I would have
    ended like the one in” One flew over the cuckoo’s nest.”

    God bless you all,
    and remember the sufferings of this world are nothing compared
    to what God has in store for those who love Him.

    Shirley

  10. Wow…I can’t believe that there are sooo many people that are suffering from the exact type of OCD that I am. I have a terrible, and I mean terrible, fear of HIV/AIDS. The sound of the words makes me cringe. Everytime I see a commercial on HIV or hear it somehow on TV I panic. Sometimes I will see a word like “HIM” and see “HIV.” It’s everywhere. The worst part of the disease for me is that it’s incurable, shameful, and totally my fault. The strange part about my OCD is that I have somehow mananged to turn my OCD into a positive thing for me (hehe even hearing or saying the word “postive” gives me chills). I am an obsessive student. Whenever I got an A- in college, I would get sooo upset and make sure that I got an A next time. I can’t go to sleep the night before a test until I am convinced that I know every single thing that I think is gonna be on the test. This sort of obsessing has been good in two ways for me…it is a disrtaction from my AIDS worries, and it has gotten me into a top grad school. I am just worried about my worries now. I don’t want them to come in the way of my studies–my dreams.

    So anyway, back to the negative thoughts (“negative” a much better word for me to think about)–I talked to the owner of this site and he said that he is gonna post my story up here so i won’t go into detail. I have been tested for HIV 5 times in the last year. I think that is my compulsion. I even have begged two people that I was with to get tested as well. All tests negative. But I still think I got it because it takes 6 months to be sure. Whenever I reach that 6 month (to the date) period I get tested again and I’m wonderful. Until I get myself into another “risky” situation (in my mind). This usually happens when I drink. I wake up the next morning having drunkenly “made out” with someone and convince myself that I have AIDS–problem is, that 6 month period starts all over again.

    My last drunken encounter was about a month and a half ago. I got tested last month and got a negative result. I am waiting for next month to get another test. I even know exactly which day I will get the test done–the day before my birthdayday (sort of a way to relax a little bit on my birthday–I even KNOW the test will be negative! But there is a little doubt). I have decided that that will be the last test. I feel better right now. I am on Prozac and reading all of these stories makes me feel TONZZZ better because I see the unreasonableness in other’s stories and then I think of mine and see that it’s the same darn thing!

    Thank you for reading thus far. I am gonna fight back. Let’s all fight together. Talking about the unreasonable thoughts with other people who don’t find them as ridiculous like”normal” people do, will help us get through this. We can’t live a life of worry. Eventually we will all die, but I can be pretty darn sure that it won’t be from AIDS–for any of us thinking about it!!!

  11. hello everybody i think i might have the same problem well i have recieved a real shock that my boyfriend is going to test for hiv. and it beat me because i’ve been thinking about hiv lately. i’ve got these lymphs but im not even sure about them they are behind my ears im scared.my boyfriend had been caughing a lot. but he went to the doctor and he suggested dat he take the test that is why im scared plz tell me i’ll be ok.things are going great now for me even my health.thank you

  12. I was diagnosed with O.C.D. only 8 years ago and am 40 now, but have been living with this all my life. Sometimes at night while laying in bed i’ll go over all of my lifes memories searching for a time when things were not this way. Just one moment, but there are none. This is truely all i know. This saddens me as i wish i could at least find a brief memory of being free of all that O.C.D. has burdened me with. I’ve had obssesive and compulsive problems with just about everything imaginable and i fight hard against them but they are unrelenting, time consuming, tiresome and painful to put it mildly. I am married and have four children. One i lost to cancer when she was only 3 years old. I realize now that i should have never gottom married or had children. Not because i don’t love my husband and my children because most certainly i do, but because i am not a good wife or mother and only cause them a whole lot of grief. I on the otherhand would be lost without them.

    If i could say one thing though, it would be that you HAVE to fight it hard. If you don’t you’ll only be giving it more power to grow and have more control over you.
    You may not be able to put out the fire by fighting it (in this case)but you can surely keep it down.

    Thanks for listening

  13. Hi everyone. I developed OCD when I was 23. I am now 34. It hurts to remember what it used to be like when fear was not part of my life. But we can’t dwell on the past, and we have to move forward. The thing is not to lose hope. In this battle we are going to have ups and downs, and we must remember that in those bad times things will get better. We are forturnate to have so many resources available to us. Although incredibly expensive to treat this illness (with the cost of medications and therapy), it’s well worth it for our sanity and serenity.

    I have fear of AIDS, too. It was the trigger for my OCD 11 years ago, and it continues to be so. It’s very frustrating. But I’m starting to pay more attention to it, instead of running away from it. What am I really afraid of? I’m not really afraid of dying, but I am afraid of getting sick. I’m afraid of suffering, and of being alone. I’m afraid of the stigma attached to this illness: that it will invade slowly, that I will lose myself to it, that I will be respulsive to others, that I will end up alone. It’s almost like fearing a monster. But I’m noticing that my very OCD is doing these things to me: I feel repulsive because of it, I envision myself driving everyone away because of it, I’m losing myself to it. Maybe, then, I’m more afraid of my OCD, then of getting AIDS. The monster is not really the virus, but the thoughts. In a way it’s very humbling and therapeutic to think about what is really behind the irrational fear.

    Has anyone else ever broken down their fears to the bare essentials?

    It’s worth seeking treatment and continuing to support each other. We don’t have to isolate ourselves, no matter how tempting it is. I have two children, and I am simply unwilling to go through life passing my compulsions on to them. I’m not going to make them wash, and clean and perform rituals simply because I’m afraid. This is my struggle, and I will continue to seek help, and be thankful for all the amazing professionals out there who work to battle along with us.

    HOPE, HOPE, HOPE. Don’t lose it!!

  14. Adelaide,

    I make a conscious effort to not incorporate those around me in my OCD. Very rarely will I ask someone to do or not do something because of my OCD. It’s my problem not theirs. I think this is wise though it can make life uncomfortable at times. (a lot)

    And I agree that I am more concerned about not triggering obsessions then actually getting a disease. I am not washing away germs really. I am washing away the anxiety. In fact if I could trade having some disease instead of having OCD there would be no hesitation on my part. I often, after having been “contaminated” by something will intentionally expose myself even more just to shorten the obsession cycle. I can’t or won’t do that with many things. But if it is something with a short incubation period or non serious I always do that and actually always have. Better a few hours or days of intense anxiety then the creeping contamination obsessions that make things around me unsafe indefinitely.

  15. Hi all,

    Well let me say I am glad I found this site. I knew there were other’s that had this type of OCD but none that I could contact. I did really really well for about 6 years taking Prozac, I mean I was so good that I actually could not believe the way I thought before and the obsessive thoughts of being contaminated. I once ruined a 10 day trip to Disney World for my children with these thoughts and I did not even eat during the whole time it was so bad (constantly thinking me or one of the kids were contaminated). Ironically it is on that trip that I called an AIDS Hotline and found that others had this and that was in 1997 I think. I could not believe others had this and wanted to talk with her about it but she could not. Anyway I started seeing a Psychiatrist and got on Prozac and felt so so good. I started doing things I was scared of like going on vacation, staying in hotels, going on rollercoasters with my family and I felt great. Well my husband and I wanted to have a baby last year so before conceiving I came off the small dose of Prozac, well now I just had the baby and he is 5 weeks and in the pregnancy I started to see the OCD coming back full force and since his birth it has had some really bad times. I in the last 9 months have had 5 HIV test due to the fact I thought I had something, or something was wrong with the test etc. etc. All tests were negative. My doctor even jokes about it but it is really not a joke as you all know. My husband (2nd) is extremely supportive of me and he has even been tested numerous times due to my anxiety and all his tests were negative as well but I keep obsessing that maybe I have a date wrong or maybe someone was out to get me at work and tried to infect me, maybe I got something from someone in the hospital and I even thought my newborn had been stuck by a needle because he had a red little spot on his thigh when I took him home that I don’t know from what and I started thinking someone stuck him and etc…I know what someone was saying about how the tests themselves are stressful you start thinking things are not clean, it is not a new needle etc…so that when you get a negative result you start thinking if the person performing the test gave you something, it is a viscious cycle. I feel so depressed sometimes and I feel it is robbing me of the joy I should feel with my newborn who I waited so long for and my marraige to a man that is so wonderful and who is so so good to me. Sometimes I think that is where it stems from that I finally got a man that is so good and loves my children (from my previous marraige) and now is the father to our son and I guess my mind is thinking that what if this happens, what if that happens. Then I am always scared of contaminating my kids especially nursing my son can be so stressful even though I was tested and my son was as it is the law in our state. I always think the worst. Please I need support from you all and we all can help each other. I cannot get on meds at this time and we would like to have another baby so I really want to get through this without meds if possible. Have any of you found relief without meds? Please let’s talk.

  16. I’m with you Carly. I know exactly what you are going through. I have a very loving and wonderful husband and family, and I struggle with the exact same type of OCD. I think my only piece of advice to you is to not give up on your dreams of expanding your family and enjoying your baby simply because you have OCD. I took a small dose of SSRI’s with my firt pregnancy, and my child is now 4 and beautiful and healthy as can be. I took a full dosage for three years of nursing, and when I weaned her there were no withdrawal effects. Now I’m pregnant with my second baby, and I am on full medications. Let me tell you… I struggle with the decision, but I am happy that I made it.

    We put off having our second baby for a long time simply because I was trying to get myself to a place in which I didn’t have to take meds. I tried, and I tried, and I tried. And it didn’t work. I suffer from panic disorder, as well, and during the time that I was off the meds, I had at least one panic attack per day. It was horrible. I tried using amino acids, herbs, meditation, and cognitive therapy. Unfortunately, nothing worked, and I went back on the meds. At that point, I decided to give up on having a second baby (I was simply determined to have a baby naturally, or not at all…. I wanted to give my baby the best start possible, and that meant doing so without medication). When I went back on meds I was really sad: I had tried so hard, and now I had to give up on my dream. But, someone put some things into perspective for me, and I finally realized that I cannot create a perfect world for myself nor for my unborn baby. It was my husband, who happens to be a physician. He said, “there are women out there taking medication for life-threatening illnesses that have healthy children all the time. Women with severe asthma who take steroid-based meds., or women with diabetes who must take synthetic insulin, among others. Having an illness should not impede one from having a family.” He also said something to me that made me feel better about possibly getting pregnant while on medication: “being in a state of constant panic is really detrimental to your body, and if you were to get pregnant while in a constant state of panic, that would be really detrimental to your baby: all the stress hormones and chemicals related to this illness would be worse than addressing the problem medically.” He also said that it’s not really the meds that determine the health of the pregnancy or baby, but taking care of myself and eating right and paying attention to my stress levels and exercising are much more important to my health and my children’s.

    I felt like my hands were tied: if I have a baby on meds, then I will worry about passing the meds on to my baby; and if I have a baby without meds, then the stress hormones could also cause harm to the baby.
    I finally decided that I couldn’t play this game any more, and that I also could not go through life grieving the notion that I never had a second baby who I felt was waiting to be born.

    Soon after going back on my meds, I got pregnant, and now I’m 7 months along. There are no guarantees in life, but I can tell you that this pregnancy has been much more pleasant than my first. Ultrasounds look good, heartbeat is good, and I feel great: I’m eating well, exercising, meditating, and I have not had a panic attack in months: and I know that this is good for my baby.

    If there is one thing I know is that kids thrive when their parents are happy…. I will do whatever I have to in order to give my children the best of me.

    I think cognitive therapy is incredible. I, unfortunately, cannot afford it (it’s $150 per session where I live), and after only a few months I had to abandon it. It was very good while I was doing it, and I hope to get back to it as soon as I can. It’s tough, especially because you have to prepare yourself to exposure events, and they are really difficult. But, I think it’s a very good alternative to meds. It’s not quick, and it can take months, if not years, to start seeing the recovery process.

    We cannot be rigid as mothers and women and expect that our lives will be perfect. We cannot control every little aspect of our lives, especially as mothers. Keep your mind open to the possibilities… they may not be perfect, but nothing really is. Do not let the OCD define your role as a wife, mother, and woman. If you have to go on meds. and you find the appropriate medical support, then do it. But once you go on meds, don’t just forget about your OCD…. keep working on it: go to therapy, seek support, expose yourself, and find ways to deal with it, not just mask it with meds.

    Anyway…. just some food for thought.
    Take care.

  17. Thanks for the reply as I am really struggling with all of this. I saw my OB on Friday and he thinks this is no joke. He thinks it is PPD and wants me to see a Psychiatrist. I cannot tell you what I go through. I woke up Friday and had to go for an HIV test so we went to a planned parenthood clinic because I had to have the results and they have the oral well I did three tests because I was convinced I might have swabbed wrong etc. The test was negative and do you think it gave me the relief I needed? NO I went to the OB and asked him to draw blood for an HIV test. (They think I am nuts but they do it for me). Then I get afraid because the nurse has the butterfly needle out of the package when I come in and then I start thinking,”is it contaminated?” It never ends. Now I have this intrusive thought that I slept with someone who was in the shop at the business that I used to work for that is HIV positive. It keeps popping in my mind that I slept with him probably because it is one of the worst things I can imagine. I keep trying to ask myself, “When did it happen, where did it happen, if it happened why did I not worry about it constantly, why did it come up after I had the baby and once early on I don’t remember when, why can’t I remember anything about it if it happened,?” I think my fear is that I did this and I can’t remember, I even want to call the guy and ask him to tell me. I know he will think I am crazy. Oh I need so much help.

  18. Carly et al., Don’t put yourself through the agony of getting the tests done. No matter what the result is, you will still believe that you have AIDS. Unfortunately, that’s what the OCD does to you. It’s the strangest disease–intellectually, you know that the test results don’t lie (especially if you have had several tests), but you nevertheless believe that you have AIDS. You know that you are thinking irrationally, but you can’t stop it, no matter how hard you try. I am an attorney and was told that this type of disorder is common in my profession because of the way we are taught in law school to analyze everything. It’s an insidious disorder that almost cost me my job because I spent most of my days and all of my nights worrying and calling AIDS hotlines. More importanly, however, it cost me years of my life, but I am here to tell you that it can be overcome with a lot of intervention, both medically and psychologically. It has been a full 10 years since I have had the thoughts. I still take medication and I still see a therapist weekly, but it can be done. More of my story is in the posts above. But don’t ever give up the fight. YOU CAN WIN IT!

  19. To anyone who reads this…

    I dont even know where to start. I came across this website today because today has been one my of worst in a long time. I sit here, crying my eyes out, and read stories so similar to mine. My fear of HIV started 2 1/2 years ago when i was 20. I had a “dumb” period when I was having unprotected sex. I saw an add for HIV and ran to the nearest clinic to get tested. I was negative. To this day, I have not had unprotected sex. However, no matter what, I can’t shake this HIV fear. It has left me so crippled. I want the life I once had – where I was happy – where I didn’t wake up EVERYDAY and wonder what would happen if I had AIDS or if I do have it. I think the worst part is when I’m around my parents, I have these horrible thoughts of what they would think of me if i had AIDS.

    I think what really set me off today is my free time. I go to summer class in the morning, then have nothing to do for the rest of the day but think. And the thinking leads me to thinking of past sexual experiences. I then analyze the entire thing — telling myself I got AIDS from it. Today – i recalled a night I was drunk and made out with a stranger. I have posted on message boards asking them if i am at risk for making out with someone. I know the answer is no – but i cant shake the thought.

    I am so tired of living like this. When it gets this bad – I have no one to talk to and even worse – sometimes I dont even want to live anymore.

    My sister is the only person in my life that knows about my fear — and even she doesnt know how bad it gets.

    Please – if anyone reads this – what do i do? Please help me. please.

  20. Anne,

    You don’t say if you are in treatment or not in your comment. If you are not I would strongly encourage you to seek out treatment. Most people can be helped. Just the act of seeking out treatment and being proactive can be helpful.

    I could give you reassurance that you couldn’t possibly have hiv but at best that would only give you a momentary respite (though I know how much value there is in even momentary respite from this nightmare). In spite of reassurances OCD will find away to keep the fear alive. It’s not called the doubting disease for nothing.

    I know, as almost all of us with OCD do, how lonely your struggle is. Even those closest to us, if they don’t have OCD, don’t really understand no matter how detailed we get in telling them about our fears.

    There is a very large online support group found here; http://health.groups.yahoo.com/group/OCD-Support/ that at least would give you contact with many others and there are a few pretty good doctors in the group as well. Check it out.

    Take good and gentle care of yourself

  21. Hello Everyone
    Wow I thought my ocd was unique but i guess its not, my father has been successfull in hiding ocd from my family for many years. I noticed he always knocked on his chin three times constantly. when I was 17 at the beach I saw a needle on the ground and my ocd hit me then and there I was up all night with these terrible thoughts i didnt know what was happening, The next 3 months i never left my house
    I found out i had ocd and my dad admitted to having it too, its nice to have my dad my best friend help me but its been tough. For 9 years now my compulsion is to write whenever i get a bad thought about a stain, band aid, what not, i have to write on paper the time it happend and what happend. when i was 21 my ocd kinda went in remission and i took all my notes and filled 3 tin garbage cans full of them and threw them away. when I turned 24 my ocd acted up again with religious thoughts like i might have murdered someone and god hates me and im going to hell or i blasphemied the holy spirit and that was hard to distinguish that as my ocd all over again. I finally got over that but im back on the aids thing again even though i just went a month ago got a test and it was negitive i look at every step i take to make sure there isnt a dirty needle around and im having trouble with small stains and im writing again, i just got a good job, engaged to be married and its been really hard lately but im getting threw. people say i care to much about life i shouldnt care, i dont like living like this i want to not care but i do. OCD is the craziest thing in this world i hide it from everyone yet no one knows the pain i go threw, i just wanted to share this with you if anyone would like to chat email me its sofakingpimp@hotmail.com, good luck with all you i feel your pain- Ricky

  22. We can lead successful lives while living with this disorder. You are not the OCD… the OCD does NOT define you… it just makes your life a lot more difficult than you’d like it to be. Most of us are doing OK… some of us have loving relationships, some of us have great careers, some of us have dreams and hopes that are slowly becoming a reality. We do pretty well considering how painful this illness is. Keeping it a secret is tough… and I certainly don’t blame any one of us for keeping our illness to ourselves. I’ve been keeping it a secret from friends and co-workers since I developed it…. but I also seek a support network that reminds me that I’m going to be okey. My family, and my therapist, and my partner are all there for me, and even when I’m embarrased by my OCD, they don’t judge me by it’s effects. These precious people keep me going, and I, in turn, commit myself to work on this as much as possible. For those out there who feel like you are reaching a low point: talk to someone who can help, remember that there’s more to you than the fear, and don’t lose hope!!!!!!!!!!!

  23. I know exactly how you feel allison. I have OCD and I OBSESS about AIDS all the time. Its like you cant trust yourself with logic. I KNOW that I don’t have Aids and I know I never will have it (because I am cautious), but knowing doesn’t help the obsessions. Sometimes you feel they’re uncontrollable. Knowning doesnt stop me from convincing myself. I have convinced myself I have AIDS so many times in the past that I think I may have felt what it would be like to actually have it… its nto a pleasant feeling and it takes over your life. I read your story and it made me cry because it was so similar to mine. It made me feel that I wasn’t alone. I think the best form of therapy is talking to others who have OCD about these things, because I know that I often feel like im crazy and alone in these obsessions. There is help. I was on medicine for 8 years. I am off now, but I am slowly finding out that I need to get back on. My obsessions are getting in the way of my daily function. However, I am becoming mroe and more open about my OCD. I used to see it as a weakness and asking for help was a weakness, but its not. I have this disorder and I want to get better, there is nothing wrong with leaning on those you love if you want to get better. You don’t have to feel alone. My psychologist said that the AIDS obsession is one of the most major obsessions with people who have OCD. It was so nice to read this thread and write this. I am 21 and have been struggling with this disorder for mroe than half my life. You are not alone… seek people who share this with you for help. God bless you.

  24. Hello my name is tina!
    I am so gld I found this site! I cant even sleep at night thinking
    I am going to die from something mostly aids or anurism of the brain.
    Please tell me how to live a normal life. I am so bitter and hateful.
    I just want to live a normal life but dont know how.
    Please help!!!! I am going crazy.
    Thanks, Tina

  25. It is reassuring to see so many other people struggling with OCD, although I wish none of us had it.

    My OCD started out with little things when I was young (couldn’t stand tags in clothes, anything binding, and repetitive sounds) but now I am freaked out about papercuts. I constantly imagine getting papercuts on my eyes or belly button (bizarre!). Sometimes, I am cringing and pressing my eyes with my hands to try and physicaly get rid of the feeling. I remind myself it is unlikely, but I can almost feel that it’s not just a thought, it’s my body out of balance.

    It gets a lot worse when I am overly-tired, stressed, eating too much junk, and generally not taking care of myself. Paxil, exercise, and sleeping more usually help me a lot.

  26. Well guys, I thought I had left OCD behind, but the wheels came completely off the cart yesterday. I was on a health web site checking on some symptoms I was having and saw that I could have a condition afflicting, among other people, those with compromised immune systems. Of course I just happened to zero in on that one fact and have been in a tail spin ever since. I have been under a lot of stress lately. My rational side tells me this is the OCD talking, but the OCD side keeps saying “but what if . . . .”

  27. Yep. That’s where OCD lives in the question, “What if?” Of course we come up with the most horrible of answers to that question. And can’t forget them.

    There is a danger in searching online for medical answers, if that is the focus of your OCD (contamination/disease type thing). You will always find something that sets you off. It’s something I try to not do any more. It’s hard. It’s that need for certainty that keeps feeding the desire to keep looking until find something that relieves the anxiety. That rarely happens. In my case it resulted in my becoming a walking text book on epidemiology. (heh) And of course makes the OCD more entrenched.

    As you already know, in time the current obsession will fade. The odds that you have what you found is extremely remote but OCD hooks onto that fact that it is not impossible and it becomes almost a reality.

  28. I can relate to all your stories. My OCD started when I was around 16. I remember in PE Class waiting for a fellow class mate to finish his trampoline routine. I was next in line. I noticed he had a cut which started to bleed (from the friction of the mat i guess) and some blood was left on the trampoline. I also had a cut on my hand. Although the blood was wiped clean (semi clean in my eyes) I was overcome with fear. The guy was the sort who seemed not to care about much, always talked about girls he was seeing etc… I analysed this for the next week, seeing only negative few points unfortunately.

    My AIDS OCD hit rock bottom after a few years more of this. What freaked me out was why I was feeling like this, how long it would last etc… I was totally bewildered. I went on medication (aropax and xanax) from the years 1997 – 2002. Whilst the medication did take away my symptoms to a large degree I was never fully cured.

    I feel very fortunate over the last 3 or so years to have found the help of david Johnson in New Zealand. His web site panicfree.co.nz gives a great overview of the anxiety state in general which is what OCD is : an anxiety. I have made major progress from seeing him. When I first saw him I thought his method of coping seemed too simple that surely it wouldn’t work. I thought that what I was going through was so complexed that only something complex itself would cure me. I still have OCD but seeing the progress I’ve made without the need for medication is gratifying. It’s made me realise just waht a big bluff OCD is. Baically instead of fighting the unwanted thoughts when they arise you do the opposite: face them, accept them, float , and let time pass. Basically I just “let it all happen” or let the thoughts do what they like, and I just get on with what I’m doing. Of course this is still very hard at times due to a sensitised nervous sytem, but understanding why you are like this and how to cope doesn’t frighten you. Yo are no longer bewildered by what you are going through. I say this in all honesty. I am a sufferer living my life how I want to. Gradually over time the unwanted thoughts will come to mean less and less. I can say this with confidence.

  29. My name is Lisa Carter and i would like to show you my personal experience with Lexapro.

    I am 39 years old. Have been on Lexapro for 2 years now. This medication had an almost immediate positive effect on my life. Within 2 to 3 days of starting Lexapro, there was a noticeable lift in my general mood. A WARNING ABOUT STOPPING OR WEANING OFF LEXAPRO: I started taking 10 mg daily a couple of years ago for about 2 months, then decided I just didn’t want to take medicine every day. So I weaned myself off over a 2-wk period, first reducing the dose to 5 mg/day, then 5 mg every other day before I stopped altogether. I figured I would be able to tell if my mood was going downhill and I would just restart if it did. Well, there was no gradual decline. I was careful to monitor my mood and thoughts every day and everything went great for about 3 months, then C.R.A.S.H!!! I mean it hit me like a WALL, very very suddenly! Despite exercising 4-5x per week, healthy eating, etc., I hit an all-time low.

    I have experienced some of these side effects-
    Constant dull headache, jittery in the morning if taken before bed, dizziness. These negative side effects subsided within a week or two. Other side effects have continued, including sleepiness and yawning, apathy, vivid (but great) dreams. My libido died and never came back.

    I hope this information will be useful to others,
    Lisa Carter

  30. I’ve just come to the same conclusion as Matthew, the more I “fought” the thoughts and the OCD, the more attention and time I gave it.

    This is what OCD feeds upon, attention and time. So it’s paradoxical, the more effort you put into fighting it and focusing on it, the more time you give it to work.

    I’ve had these thoughts for over 2 years now, have been through CBT with a well known OCD author as well as tried some SRI meds. These things helped a little, but for this type of OCD, with fear of HIV contamination, I’ve found that the only way to actually enjoy life is to accept the thought.

    My current thought is “I shook hands with a man who had cuts on his hand, I had a cut on my hand, he must have infected me with HIV”. Most of you will probably find this ridiculous, but we all find thoughts like this ridiculous if they are not the ones in the current OCD “limelight”. That’s what I’ve noticed, OCD doesn’t care about the thought, the thought is just there to explain the emotion. You could be obsessing over an incident and convinced you’ve contracted HIV from it, then another incident will occur and you won’t pay any heed to the previous incident, it seems OCD only has time for 1 thought at a time.

    So now I just submit to the fact that this OCD will convince me that I am infected with HIV by some never occurred before transmission route, and that I will whole heartedly agree with it.

    Once this was established I felt absolutely emancipated from the responsibility of it all, because I realised that if I am infected by HIV by one these never occurred before transmission routes, it isn’t my fault, I’ve done everything humanly possible by having safe sex, and not sharing needles (not that I inject drugs anyway).

    I then further explored my worst fear. Okay you’ve made history by getting infected by HIV in this manner, in a few years you’ll start noticing some symptoms and get tested a few times, you’ll know then that you have the disease and will consult a HIV doctor for a schedule of monitoring and treatment, you will most likely live a full life span, albeit with the possible requirement of taking meds each day to sustain it.

    After I played it all out in my head, it wasn’t that scary a monster anymore. Then I figured hey, if that’s gonna be the case then I’m sure going to have as much fun as possible before I die.

    It’s then that I realised that I was always waiting to be happy, “I’m going to own this car/home, have this family, have this career, etc etc” then I’ll be happy because I’ve succeeded, this is a load of bull that we’ve all be conditioned to believe, “you must put in work and effort in order to be happy” screw that, happiness happens in the present not in the future or the past.

    Each morning I wake up and ask myself this:
    “What am I going to do today to make myself feel great?”
    There may be a few things, but as long as one of those things is accomplished then I’ve succeeded.

    I’ll then fill my body with positive chemicals by standing up straight facing the ceiling with a big goofy smile on my face while listening to positive music. This will look silly but trust me it works!

    Then I get on with the business of doing things that make me happy, today it is going to be cleaning out the back porch and rearranging my room for a more enjoyable and tranquil environment, schweet!

    Each night I ask myself this before I sleep:
    “What have I done today that has made be feel satisfied”

    I hope this helps someone in need.

  31. Wow, I don’t even know where to begin. I seriously didn’t think there were other people out there going crazy over the same thing that I go crazy over.

    I was diagnosed with OCD when I was about 11. I’m 20 now, and doctors say that my OCD is probably the most severe case they’ve seen in awhile. My HIV/AIDS obsession started may 7, 2007 (sad I remember the exact date, isn’t it?) when my friend and I went to a nail salon. The lady ended up cutting my cuticle with the trimmer and I bled pretty badly. All hell broke loose at that point and it’s been a downwards spiral since. I’ve always had OCD and been very weird about germs and contamination and diseases, but never like this. It’s really intense. I was also diagnosed with schizotypal personality disorder, so I always think that the universe or something is going to set up situations where I could possibly contract it because I think about it 24/7 and these bad/strange feelings that go along with it, even though I don’t have sex or do drugs or anything. Then I start seeing “coincidences” occur about things that I’ve thought of and thought I made those things happen.

    Anyway, I went and had a test done after I got cut, and it was negative. But since then, I think I’ve become infected again. I went to have my blood drawn at a different place (a doctor’s office, not a lab). And I’m so used to needles being in packaging. But this needle was just capped and sitting in these little colorful boxes, I had a strange or bad feeling about the nurse and thought that she had a disliking for me, so I thought that she purposely used a dirty needle on me. I watched her get everything out, and even throw it away when she was done. I also asked her if the needles were clean, she and another nurse laughed and she made some sarcastic comment like, “Yeah, I stick everyone else, then I stick myself”. Anytime someone bleeds and they accidentally touch me or bump into me, I freak out and obsess over whether they got blood on me. I’m paranoid that people who know about my fear will purposely try and harm me and infect me. Even when I go out to eat, I have to disinfect the silverware, I never send anything back for fear they might do something to it, I only get clear sodas incase there might be some blood in it, so I can see it and stop myself from drinking it. I even hate the word positive. I hate it, I have this thing where I have to say the word negative over and over again. I have the most horrible thoughts that go through my mind every minute of every day. Germex and I are attached at the hip. I’m never without disinfectant. People in my class may joke about my OCD and I will too (they’re not mean about it or anything) but I don’t think they realize how hard it is living with something like this.

    Like someone said earlier, it’s not that I’m scared of dying from it, I’m scared of living with it. I have a fear of looking repulsive and disgusting and people just leaving me. I always think that if I don’t look at least halfway decent, nobody will ever want to be with/around me. I’m scared of possibly infecting others, I’m scared of losing control of my body (cause of everything that happens when you contract it) and having to have people take care of me and treat me like a baby again. I always feel dirty/infected. And it’s not like the kind of dirty where you can hop in the shower and feel clean again, I feel dirty and disgusting deep inside of me. Like I just want to rip off my skin and tear away my muscles and everything, it’s a horrible feeling. Even though I know I most likely DO NOT have it, I always think “What If?” I get a gut feeling that it’s in me, but then I don’t know if it’s really just my OCD/Paranoia. When I look at myself in the mirror, I see someone disgusting and sick. And it hurts to live like this.

    I’m currently going to therapy, but it’s not doing much good. I used to take meds, but they didn’t do anything. Doctors are trying to convince me to go on meds now, but I’m afraid of the side effects. I also have this fear that if I start taking them, and then I get tested, that the meds will screw up my results somehow and give a false reading or something. Every month I say to myself, “Ok, starting next month, I will count down six months until I can go get tested again. I just have to stay clean”. But then something always happens in the next month where I think I became infected. It’s a horrible experience and I truly feel for all of you out there suffering with the same thing. People can say they understand and stuff, but nobody really understands until they’ve walked in our shoes. They don’t know what it’s like to be consumed with a constant fear of illness. I really wish all of us the best of luck, and I hope that one day we can beat this monster known as OCD and live a more happy and free life.

    God bless you all!!!

    • It has been a long time since the last post on this thread, but I thought I would like to add my story.

      I have OCD and hypochondriasis for my entire life. In high school we did an egg baby project and I picked the hollow egg which meant mine had a defect, then I picked the defect and it was hiv. Since then I have been convinced that I or one of my children will get hiv. The fear is ruining my life. I have four children and am in a committed marriage for the past 12 years. I have been tested twice during each pregnancy and then again at least 3 other times. I know the modes of transmission but I think somehow I or one of my children will get it in an unconventional way.

      When my 10 year old was 2 I got him an ice cream cone at McDonalds after he ate a lot of it I say red streaks in the vanilla ice cream and took it away from him. I then believed that someone infected with hiv put blood in the ice cream on purpose and now he has it.

      I also think that whenever I get a test the person drawing the blood is using a dirty needle and purposly trying to give me hiv. I am so afraid all the time and I start to feel the symptoms of the disease. I then go back and think of ways I could have got infected. I had a biopsy on a mole and they used novacane to numb the area and I think that the needle had hiv blood on it. Then I though I had thrush in my mouth when I didnt and I went to the ER insisted that I had thrush and must have hiv. They told me this was an irrational fear and sent me home. I still keep thinking of ways I could have gotten it. I am afraid that when I go out someone will prick me with an infected needle or put blood in my food or drink. I know the virus dies quickly outside the body, but I still think that I or my son or other children will get it. I obcesse over other illnesses as well, but the hiv fear has been most prominent since the high school project. I wish I could get over this fear. I want to have my 10 year old tested, but im afraid of what the doctor will think. I have talked to many psychologists but I can’t get over it. I have been prescribed lexapro, but I look up the side effects and I am afraid to take it. I can’t take this fear anymore. Everytime I get a negative test for myself I find another way that I think I could have been infected. It is good to hear other people share this horrible fear.

  32. My obsession is very similar to yours Alison, I live in constant fear that I have somehow made my kids and wife sick with HIV. Be it by kissing/licking a cut on my sons finger after him stacking his bike to not knowing how Ive made my other son sick but thinking he is. Its a horrible feeling and like youre living in a nightmare. Im just about to start some new meds as thr prozac didnt seem to work with me, so fingers crossed… I hope you are well and the obsessing has eased.

  33. Hiii…i am glad i found this site where i can talk about my feelings. I got sick some time ago just a minor infection fever dihorrea and weakness that went away with some medicine by the dr. I got my CBC which is perfectly normal. Thenafter i started getting digestive issues constipation , bloating, acid reflux , sleep apnea, malaise. Now the thing is although i am a virgin dont do drugs and have never had a blood transfusion etc i just keep on imaginig that i have hiv even when i kmow that there is no possible way. My dr. says that its just my digestive balance disturbed after a bout of infection due to resteraunt food but i am obsessed about hiv. I had a sore throat after drinking pepsi which is very common for me but then again i panicked. I convinced myself with oral thrush although i dont have it. I am googling each and every symptom all the time 24/7. I think i’ll go crazy.One moment i feel i am absolutely fine and the other i am having an anxiety attack. What shall i do?

  34. I am afraid of hiv and i think i have it although it has been proving medically 10 times in the last year that i am healthy.
    After 7 tests i decided i would get tested one last time (i wish i never did).
    I went and after the nurse pricked my finger with a lancet, i somehow was convinced that the lancet was contaminated although i was assured that it was a single used one.
    I waited for 14days then went and got tested, right before i walked out,i saw a sign that said “needle exchange” and i got convinced that they must have used an old needle to draw my blood.
    I waited again for 14days since they told me that’s the window period for the 4th generation antigen/antibody test.
    I went to a different lab and after the lady drew my blood, i noticed a piece of gauze on the table with blood on it, i just couldn’t figure out how blood got to it except that the lady must have had a cut.
    I know this sounds crazy but i can’t get the fact that i have hiv out of my mind.

    • No, David it doesn’t sound crazy it sounds like OCD. As Alison’s Story has garnered the most comments it is also clear to see it is a common form of contamination type OCD. So you certainly are not alone in this.

  35. Hi never realised people are going through this to! I’ve had OCD since I was 4 I’m 35 now and my life is like hell! My hiv fear started when young when someone cut themselves on me but it’s gone up a next level since I was 31! I slept with someone and caught a std! Since that I would go for a test every few weeks I’ve had about 80 now! All over the place I would go sexual health clinincs, doctors all over! They all know me now and I get so embarrassed but I still go! My fear now is if I find a scratch or a prick mark or anything that has broke my skin I automatically think it’s from a needle! I’ve never seen a needle in me but I always think if I’ve been pricked by one when I wasn’t looking or never felt it! Everyday I think about it, I none stop phone up clinics, helplines and the worst place the internet! They say it’s hard to catch it from a needle but I swear I’m cursed and I will get it! I obsess so bad my life is ruined by it I hate it! Cbt is impossible cuz how can you confront being pricked by a needle?!?! Does anyone else have the same as me with being pricked by a needle? I will go in the chemist and get clean needles and even prick my self or scratch myself to see if it looks like the scratch I found!

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