August 2011

We all scroll through them and pay scant, if any, attention to what we are agreeing to - we click the 'agree' on the drop down box and move swiftly on. If we ever return to them and see what we have agreed to it's usually when we are unhappy with how whatever we have installed is performing.

Well, like many, if not all, people I had no idea of the terms and conditions of HIV, but the minute I received my positive diagnosis I started to consider the terms and conditions.

1: I will be under medical supervision for the remainder of my life.

Now this was the first thing that occurred to me, and it was a tough one to accept; prior to my diagnosis I hadn’t been to the doctor's surgery for approximately 11 years. That’s not to say I hadn’t been sick, but my usual approach to anything was to curl up in bed and wait to get better.

Post-diagnosis it seems I was never away from the place. Make appointment to have bloods done and before I left make an appointment to get results. And repeat the process. For the first six months I had to have my bloods done every month so that meant a visit to the clinic every two weeks. And trying to fit it in around work was anything but easy.

2: Any relationship you enter into at some point will be put under the strain of disclosure.

The question of 'when' is not one I have found an adequate answer to. Since so many potential ‘relationships’ are forged online these days I have found it easier to state my status on my profile, but what of those moments when you actually meet someone at a party or through work?

Do you tell them on the first date, thereby opening up a very deep conversation that will overshadow any joy that a first date should have? Of course the possibility of being rebuffed due to status in the early stages can be weighed against being rejected further down the line. But I have come to realise that rejection never feels good either early or later.

Do you wait until things look like they getting serious? But then of course you still have the possibility of being rejected and possibly in an angry and aggressive manner. Of course an immediate volte-face in emotions is one of the most stressful and confusing things to deal with, when it comes from someone you have feelings for.

And then there is your employer. There are pros and cons for disclosing early. HIV is one of the few long-term conditions that is covered with immediate effect in the Equality Act. An employer has to make reasonable adjustments to your working conditions, so if you are in a position where you need time off for clinic visits there is a lot to be said for immediate disclosure. However, you might find yourself in a position of having an unsympathetic employer, and although it is illegal to discriminate on grounds of health or disability you might have a boss who could make your life hell.

I don’t for one second think I have the answers to this, as it is purely a personal thing.

3: Drugs.

Now I am not talking recreational ones here! From the point of diagnosis forward you are watching your counts to judge when you might have to start them. The intelligent part of your brain tells you not to worry as you will be guided by your consultant, and they are a lot easier on the system than they have been in past years, and taking them will give you a long and healthy life.

Well in part that is true. The doctor will indeed advise you as to when to start, but depending on your doctor, there is a certain amount of autonomous decision making to be made.

Medication is now much more effective than it has ever been but it is no less toxic, and it not as easy as everybody thinks with regard to it being one pill a day!

The one pill a day formula does not suit everyone, and in fact is unsuitable for more people than it is suitable for.

For myself I am on seven tablets a day - five in the morning and two at night. But it’s not as easy as when you wake up and go to bed. No you have to consider the half life of the drugs you are taking and the second batch have to be taken between 11 and 13 hours after the morning batch.

The morning pills are easy they sit in a pill planner next to that other drug I cannot function without -- ‘nespresso, arpeggio’ -- but the evening's ones are not so easy! You need to carry a supply with you. Especially if you are not the type of person to get home at a regular time. Or have a social life! So that conspicuous little rattling box goes everywhere with you. And of course there is the fact that you wont always remember so a reminder gets set for 7pm each evening and buzzes at the most inconvenient times. (This is an as yet unproven, but I am certain a scientific fact.)

And then there are the side effects, night sweats as your system gets used to the toxins, then not knowing if you are going to wake up with your skin falling off or your insides falling out. Diarrhoea on average of four times a day - for me it lasted for eight weeks but even now I can hit me very suddenly. Disturbed sleep patterns - I am not a good sleeper at the best of times, but was almost driven insane by waking up every hour on the hour! Dry flaky skin - I don’t mean a little dust but there are days I feel like the singing detective when I undress, I have to have a decontamination zone in my flat. Aching bones - yeah, bones, not muscles. This is not an, 'I have worked hard at the gym' feeling, but a feeling that your bones are about to collapse.

So these are a few of the terms and conditions of the contract you have signed, and you never seem to be aware of them until you want to dispute them.

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