HIV and OCD: Part 1 – the obsessions and compulsions

Nothing like a bit of blood to get the old contamination obsessions going

Introduction

Since having OCD there have been two main obsessions I have had: HIV blood contamination and the Unpardonable Sin (I will talk about this soon). Both of these obsessions have brought me to the point of not wanting to be here. My family and OCD therapy saved my life – no question. The HIV obsession has been on and off since around 2007 when I first went to live in Kenya (I have had it just as bad in the Britain I might add, it wasn’t just because I was there).

This post will give a brief overview of the HIV obsession and the compulsions, but as time goes on I want to unpick what I went through a bit more with some specific examples and reflect on how bad this OCD theme got. I would also like to cover what strategies worked to recover, how I bounce back from lapses, and discuss the challenges and pitfalls along the way.

Before I start: I abhor HIV stigma

Now, I want to be absolutely clear from the outset: I mean no disrespect to those with HIV with anything I ever write on this topic. There is no shame in having this disease, I despise stigma around HIV. With modern advancements in medicine, anti retroviral drugs allow people (with access) with the virus to live full and healthy lives. But even that is irrelevant to this point. No one with any disease or illness should have to feel shame or stigmatised, ever. Sure, it’s not something anyone would voluntarily contract, but this is not the 80s and 90s anymore. Unfortunately much of the fear and stigma from these decades remains even today. I am actually quite knowledgeable about the virus and its effects. In fact, for a couple of years during this obsession (before I knew I had OCD) I worked for a charity that specialised in HIV awareness and treatment in Kenya. I was actually working for one of the offshoot projects working with children living on the streets, but I regularly met with HIV patients. I also volunteered every other Friday to help with the children’s support group at the centre. Certainly no judgement from my side. The guilt I have experienced in the past having this obsession has been tremendous. However, now I know it wasn’t my fault.

So why be that bothered?

I didn’t choose to become obsessed with this virus. It could have been anything. It is often said with OCD that it goes after what we care about. Perhaps then it’s because I value my health? But then why this particular disease and not others? Maybe it’s because I hate the HIV stigma? Nope, I got this obsession when I was ignorant about the virus and it remained when I became educated about it. So what then? To be honest, I just don’t know. It’s similar to when I was obsessing about testicular cancer but didn’t care about any other type of cancer. My obsession has actually never had much to do with the HIV virus itself. The obsession is more about the uncertainty of whether I have or will get it and what this might mean (or later, if I had it and somehow passed it on to my boys). This is why, when I was severely unwell with this obsession I didn’t want to live anymore at times (paradoxical I know), and also why I would sometimes think “I wish I just had the bloody virus” (no pun intended) because the obsession was causing me more pain than anything the virus itself could do to me.

It’s important to remember that OCD has no logic and trying to attribute meaning behind obsessive thoughts can actually exacerbate symptoms.

So what triggered a HIV theme then?

All I remember was one day during August 2007 ignorantly asking the manager of the first charity I volunteered with in Kenya: “can you contract HIV from sharing cutlery”? Of course she said no. “But how can you be sure”? I said to myself, and BAM! 13 years later I still get the odd few days when I am consumed with this obsession. 13 years of my life this virus has traumatised me on and off. That said, even when my OCD has focused on something else, or when I have felt “recovered”, which is 80% of the time, I still have the traumatic imprint on my brain. I’m not sure if other OCD sufferers also relate to this, but I suspect they know what I mean.

How the OCD presented

It is well documented that HIV is only contracted via unprotected sex, sharing IV needles and mother to baby, with the odd, but rare, healthcare setting accident. So intense was this obsession I still have the statistical probabilities in my head for each type of exposure (if you get a HIV related Who Wants to Be a Millionaire question, I’m your man for ‘phone a friend’). The only considerations I will write about here are those where the thoughts about contracting HIV were wildly irrational (this list is by no means exhaustive):

Obsessional thoughts

Ways in which I have “caught” HIV in the past:

  • Shaking hands
  • Using a public toilet
  • Getting scratches
  • Caught it from myself (wow right?)
  • Caught it from hotel bed sheets
  • From contaminated food
  • Sharing a towel
  • Playing with other children
  • Contaminated toilet paper
  • Picking my nose (don’t ask)
  • Gym equipment
  • Sharing drinks

(From 2013 onwards) Ways I have thought I might have passed the virus on to my children:

  • Changing nappies
  • Kissing them
  • Bathing them
  • Playing with them (especially when they would bite or lick as toddlers)
  • Preparing food for them
  • Play fighting with them
  • Hugging them
  • Them accidentally touching cuts on my body with hands or mouth

What were the compulsions?

  • Frequent testing (40+ estimate) – (I haven’t had a test in 7 years mind you so I did well to cut this one out completely)
  • Checking for small cuts on body or breaks in the skin
  • Recalling memories and events
  • Researching transmission rates
  • Researching the ways HIV has been contracted
  • Scouring forums looking for evidence I might have contracted the virus from an unusual event
  • Calculating probabilities however remote
  • Writing essays with academic references to disprove the OCD concern and keeping them in my pocket to read throughout the day
  • Taking photos of negative HIV tests to reassure myself
  • Asking family members for reassurance

And now?

Nowadays this obsession bothers me, to the point that its highly distressing, about 2-3 times a year. Usually I’ll be very tired or run down, especially if I overdo it at work or with fitness. Then a “spike” or some time of “accidental exposure” (seeing blood in a toilet or something) will happen and I will give in to compulsions. The compulsions are usually only online research and rumination, sometimes reassurance. These episodes last between a few days and a couple of weeks. They are nowhere near as bad as they once were most of the time, but it still takes a concerted effort to get better.

In the next post about HIV OCD I will talk through a few of the major incidents I struggled with and how the compulsions manifested.


For those who want to read more about OCD and blood contamination please see Jon Hershfield’s excellent article here. I also strongly recommend Dr David Adam’s book the Man Who Couldn’t Stop who, he also had this obsession.

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