23 Days to HIV
It was due to social platforms, technology, and confiding in a friend that I was able to create a day-by-day account from the very moment I acquired HIV to the moment I was diagnosed HIV positive. For some, an HIV diagnosis can come out of the blue often leaving them to recall a period when they had a bad case of the flu or a rash that came and went. And for some, an HIV diagnosis can leave them totally bewildered as to how and when they acquired HIV.
But knowing as much detail as I do about how and when I acquired HIV doesn’t bring any comfort nor take away the diagnosis. They say “knowledge is power” and by that, I am sure they mean ‘U=U’ (Undetectable = Untransmittable) is all the knowledge you need. And as for ‘power’, well, that’s not to dwell on what was before, but live for the mother fucking ‘now’!
This photo (selfie) was taken around 4 hours before I invited the individual on Grindr into my home. As soon as I’d given him my address as he was close, I regretted it and thought I should cancel. The doorbell rang and not wanting to go through with ‘it’ I thought I could ignore the ringing. Then I thought ‘we are all adults here, I’ll politely decline and offer him a drink’. I opened the door and in he walked, following me into the lounge. I said I was no longer in ‘the mood’ and would he like a drink instead for his trouble. I gestured to a fairly decent selection on my lounge bar and as I turned to face him… I was out cold.
LAST SELFIE: HIV negative
After a relatively bad nights sleep, I woke in the morning still a little confused but wanting to see if there was anything I needed to do given the circumstances. I, like most, turned to ‘Google’ and almost instantly after a few dodgy searches with ‘phrases’ [what to do after gay rape] I landed on the website for 56 Dean Street. ‘PEP’ (post-exposure prophylaxis) was the title of the page. I had vaguely heard of ‘PEP’ and as I read the web page I was not truly digesting what ‘PEP’ was or if I needed to take it. I was, admittedly still a little dazed and confused. I was also with a swollen and bruised face, toothache, and damage caused to my anus to contend with.
I realised I was not thinking straight and thought perhaps I should just reach out to 56 Dean Street despite never having used their services before. I wrongly felt all these ailments were beyond their remit but, truth be told I was highly embarrassed.
I closed their webpage, I guess a conscious decision but I have to say recalling that precise moment I lacked a clear sense of judgment. Although I did order a SHL (Sexual Health London) STI test kit. I knew I was outside the HIV window but I have to say my priority in ordering the home test kit was for all the other STIs and not specifically HIV. Although HIV was at the back of my head I just felt given where we are in today’s world with HIV transmission rates being low, that, ‘I’ll be ok’.
Received SHL (Sexual Health London) home testing kit. The kit required a rectal swab, throat swab, urine sample, and a small blood sample from a finger prick.
The samples are run Gonorrhoea, Chlamydia, Syphilis, Hepatitis B, Hep B Antibody, and HIV.
I collected all the samples and posted the kit using the self-addressed label.
The laboratory runs my samples and the results are:
Gonorrhoea (Rectal Swab) POSITIVE
HIV (Finger Prick) NEGATIVE
Gonorrhoea (Pharyngeal & Urine) NEGATIVE
Syphilis (Finger Prick) NEGATIVE
Hepatitis B (Finger Prick) NEGATIVE
Chlamydia (Finger, Urine & Swab) NEGATIVE
I immediately make arrangements with the nearest GUM clinic, which is Burrel Street given services seem to be either rediverting resources and/or becoming overstretched by the emerging Covid-19 pandemic in London. I have an appointment for tomorrow at 11am.
The key thing to note with this test is that I am HIV negative’. Meaning I was not already HIV positive before and/or at the time of being assaulted, although this was not news nor surprising to me as I already knew my HIV (negative) status.
ONSET FLU-LIKE FEVER
I arrive at the clinic and am sat in the waiting room with a face mask on for a few hours. I am starting to feel rough, as though I am coming down with the flu. I tell myself I am being a hypochondriac and it’s most likely given we are under strict instruction not to attend medical settings if we feel we have flu-like symptoms as this could be covid-19. I am first seen by a ‘screening’ nurse who verifies my Gonorrhoea result using my SHL test link.
She then sent me across the hall to another room where I am to see another nurse and receive treatment. As I am shown into her office she is on her mobile phone as I take a seat and she is picking her nose, looking at what she has managed to forage before she wipes her finger down the side of her skirt. I am looking at the posters on the wall, the biggest one in front of me is for HIV testing which is clearly marked with a date making it 6 years out of date. The message was to ‘know your HIV status’ which I guess never goes out of date. I must admit by this time I hoped the poster wasn’t someone trying to send me a message.
The nurse gets off her mobile and having listened vaguely while pondering my own HIV status as a result of the recent event she shared that her daughter has locked herself out of the house and couldn’t be bothered coming to the clinic to collect her mother’s keys to regain access. She then asked what I was in for and I shared that I had recently been raped and as a result had tested positive for Gonorrhoea of the anus. She asked me to share more detail and I did, although I wasn’t sure if she was going to offer any help and/or advice or if it was merely pure curiosity.
Her first real question was “what did he look like”? As I started with his height and hair colour she interrupted “I mean skin colour”! I felt nervous as he was of the same ethnicity as the nurse. “Black” I replied. She slammed the desk with her palm so hard it made me jump as she exclaimed “the bastard”!
“Well, shit happens” I replied. She then asked me “where was he from” to which I replied “Grindr”. The nurse then confused me when she sought clarity by asking “no, what type of black was he” to which I replied, “he was just black”. She then sought clarity by asking me “was he African black, or [can not recall the other term]” Slightly baffled I replied “I really don’t know” before bringing the conversation back to treatment for the Gonorrhoea. Slightly concerned she had not washed her hands since picking her nose I asked if I could wash my hands in a bid to encourage her to do the same which she did. I was relieved when her mobile rang again and she quickly handed me a specimen pot and a swab and asked me to take a rectal swab behind the closed door of an adjacent room.
As I was squatting behind the door taking the sample I could hear her arguing with her daughter who seemingly still did not want to walk the short distance to her mothers place of work to collect the house keys. I took the sample and returned to the seat at her desk. Once she finished the call I asked about HIV testing to which she replied “it’s too late for that now, you will have to give it 3 months and test then”. We returned to the adjacent room for an injection in the backside and a prescription for 7 days and I was told to make an appointment on my way out for 7 days time to see if the infection had cleared up and the medication had finished.
FLU-LIKE FEVER
FLU-LIKE FEVER / BED SWEATS START
FLU-LIKE FEVER / BED SWEATS
FLU-LIKE FEVER EASES OFF
BED SWEATS CONTINUE: And are nothing like I have ever experienced before. I am literally waking up thinking I have pissed the bed.
RASH
The bed sweats are still horrendous and as I brush my teeth, standing in front of the bathroom mirror I see my entire torso has a bright red, blotchy, with an almost honeycomb pattern rash across it. I had noticed previous mornings my skin seemed a little irritated from sweating in bed, however, this was different. I took a shower and the rash remained and was still present a couple of hours later. I messaged my friend and said, “FFS, I hope this isn’t HIV” given I seemed to be displaying the symptoms of seroconversion.
SEROCONVERSION
Seroconversion is a sign that the immune system is reacting to the presence of the virus in the body. It’s also the point at which the body produces antibodies to HIV. Once seroconversion has happened, an HIV test will detect antibodies and give a positive result. The most common symptoms of seroconversion are sore throat, fever, and a rash over the body. [Terrence Higgins Trust - Symptoms of HIV]
RASH SUBSIDES AND IS ONLY EVER SO FAINT ACROSS THE STOMACH
As a hotel operations manager, I knew to invest in a quality mattress protector. But after those sweats, I wasn’t, taking any chances, so in the tub the mattress cover went.
RETURN TO CLINIC
I had now completed the 7 days of medication for Gonorrhoea of the anus and attended my appointment at the clinic. I waited in the waiting room for 2 hours despite having an appointment. I didn’t see the same nurse, but a different one who stated they would usually do a swab to check if the Gonorrhoea had cleared up. But given the Covid-19 pandemic and the NHS redirecting their resources, such as lab [testing] work. This nurse told me to order another SHL (Sexual Health London) test to check that the Gonnorrhoea had cleared up. She then promptly sent me on my way.
ORDER HOME TEST 2
I ordered the 2nd SHL (Sexual Health London) home test kit from their website the day prior after leaving and on the direction of the nurse at Burrell St Clinic.
FLU-LIKE FEVER
After shaking off the first feeling of fever, it was back. Some of the symptoms were headache, flushes & cold sweats along with feeling lethargic. There was no Covid-19 testing for the general population but I didn’t have any Covid-19 symptoms such as coughing, loss of taste or smell etc.
FLU-LIKE FEVER
FLU-LIKE FEVER SUBSIDED AND FEELING MUCH BETTER
RECEIVED 2nd SHL HOME TEST KIT
I received the SHL home test kit and collected all the samples as required. I posted the samples using the self-addressed postage label.
I did not know it yet, but the blood drawn for this sample was HIV positive meaning it was 23 days from the date of infection to the date the sample tested, had been drawn.
TESTING LAB ACKNOWLEDGES RECEIPT OF TEST KIT
2nd HOME TEST RESULT:
Gonorrhoea (Rectal Swab) NEGATIVE
HIV (Finger Prick) POSITIVE
Gonorrhoea (Pharyngeal & Urine) NEGATIVE
Syphilis (Finger Prick) NEGATIVE
Hepatitis B (Finger Prick) NEGATIVE
Chlamydia (Finger, Urine & Swab) NEGATIVE
AUDIO: When SHL told me I was HIV+ (Transcript voiced by an actress)
The result at this point is unknown to me as I was in the middle of Sainsbury when I received a text message saying I needed to call SHL (Sexual Health London) about a “recent test result”. As I was at the self-checkout I fired my shopping into bags and made the 2- minute walk home knowing something was wrong and quite possibly what the outcome was going to be. I didn’t bother putting the shopping away, I called SHL, and the conversation when as follows:
RESULT: Home test detects HIV antibodies
SHL: When did you last do a test with us?
ME: About 2 weeks ago.
SHL: Ok, so why have you ordered and taken another? Because you only get a financial allowance to do 1 test every 12 months!
ME: Because the nurse at the clinic said due to covid-19 I should do a home test to check the Gonorrhoea has indeed gone.
SHL: Hmm. But I don't understand why you ordered a new test!
ME: Because the nurse told me to, do you have the result?
SHL: Yes, Gonorrhoea came back negative. But in the future can you make sure that you only order the tests you need!
ME: I just ordered a home test kit, that's all that is available on your website.
SHL: Yes, well next time call us and tell us what test you need, and we can send it out. Ok!
She was then trying to terminate the call; the whole time I was thinking she hasn’t mentioned HIV yet.
ME: And the HIV test? Do you have a result for that?
SHL: When did you last test for HIV?
ME: About 2 weeks ago, with an SHL test, it was negative.
SHL: Yes, I can see! So why did you do another HIV test?
ME: Because as I have said I just ordered the home test kit from your site as the nurse instructed me to and sent the samples back. The leaflet in the kit says if not all samples are sent then a kit may be rejected.
SHL: It came back reactive!
ME: What’s that mean?
SHL: Reactive.
ME: What’s that mean?
SHL: (Tuts and sighs) The test showed antibodies for HIV.
I then called Terrence Higgins Trust and spoke to an advisor working from home due to Covid-19 guidance. I was directed to 56 Dean Street who saw me that afternoon. The nurse ran a confirmatory test declaring “that confirms it [HIV], sorry William”. The nurse took bloods and managed to squeeze me in with Dr McGowan the next day to start ART (antiretroviral therapy).
VIRAL LOAD: 2.3 MILLION copies/ml
CD4: 973
MEDICATION: Rezolsta & Emtricitabine
Dr. McGowan looked over my blood result from the day prior and opened the booklet to show me which medication he had selected to be more effective for me.
CHANGE: To 1 pill a day
VIRAL LOAD: 142 copies/ml (Undetectable*)
CD4: N/A
MEDICATION: Biktarvy
And while I was technically undetectable, I first needed to remain undetectable over a minimum of a 6 month period before U=U (Undetectable = Untransmittable) applied. But how amazing it was to be ‘technically’ undetectable within 57 days, all down to science and the power of medication.
VIRAL LOAD: 84 copies/ml
CD4: N/A
MEDICATION: Biktarvy
WHAT WOULD I HAVE DONE DIFFERENTLY?
Sought help and advice!
There is no doubt the people on the front line of these services are qualified to dispense the right advice which for me, even the morning after would have been to administer effective ‘PEP’ treatment (up to 72 hours after possible HIV exposure). Even if you are not familiar with sexual health service providers, they do not judge. If anything they have seen it all before so it is highly unlikely you will be the subject of whispers and sniggers. And ‘if’, and it is an extremely massive ‘if’, such providers were to behave in a manner you may perceive them to, what’re a few whispers compared to a life with HIV?
And what I mean by that, is that HIV is no longer a death sentence and PLWHIV are expected to have a normal life expectancy. But having to work your lifestyle and routine around 6 monthly tests, needles (which I hate), medication, restrictions to visit some parts of the world, finding a relationship, and sometimes stigma. Then I only wish I’d put my embarrassment to one side and either called a professional and/or sought PEP if I had truly appreciated what it did.
While HIV is easy to manage, seeking help at the earliest opportunity to ensure your life is that little less complicated is vital.
LINK: WHERE TO ACCESS PEP (UK)
“The best place to get PEP is a sexual health or HIV clinic. If you need PEP over the weekend or outside of office hours, when clinics will often be closed, the best place to go is an Accident and Emergency department.
PEP is not normally available from GPs.” [TERRENCE HIGGINS TRUST]
