For this piece I decided I would open the floor, so to speak to my Facebook network and ask my friends what they’d like to ask me, but had never dared, or had the opportunity, about living with HIV. The questions flooded in! So much so that I think they will fuel several more articles as I would have drafted a book before managing to answer each and every one of them. There were 5 areas that kept cropping up:
- Daily life & the future
- Treatment & the clinical sides of things
- Reactions & stigma
- My daughter
DAILY LIFE & THE FUTURE
How does it affect you on a daily basis? Do you feel ill physically?
Quite simply, no – I am fit and well. The majority of days I don’t even consciously think about it anymore, and it’s only usually when something happens, such as cutting my leg while shaving that I suddenly think ‘oh yes, I have HIV’. This is quite different to earlier years when I was diagnosed and it played on my mind heavily and I was paranoid that every sniffle would turn into something far more sinister!
Does it stop you doing anything?
Honestly, no – although I suppose I wouldn’t go out and find a guy in a bar and have a one night stand! But that’s probably much more to do with the fact that I’m no longer a care free art student and am now 30+ and a single mum, rather than the fact that I’m HIV+!
Does it ever make you scream or cry?
Again no. I actually feel incredibly lucky to be here, that I have been diagnosed and that I am able tell my story. J’s father doesn’t have the same opportunity and that does make me cry. But I get upset because J doesn’t have a father figure, rather than that he died due to HIV.
How do you maintain your optimism and positivity?
I took this question as quite a compliment! Like everyone, I have up days and I have down days. A couple of years ago, I approached my GP after deciding that I felt I wanted to start taking anti-depressants. I guess it is somewhat ironic that I really really struggled with that decision, took months to pluck up the courage to book to see the GP and actually discuss the fact that I felt depressed.
I felt that depression was a weakness, a sign that I wasn’t coping, and I really struggled with admitting that out loud! I have since tried to embrace my antidepressants and acknowledge that, actually I have been through some nasty sh*t! I found, and still find, it far easier to discuss the fact that I’m living with HIV than that I’m living with depression!
What scares or worries you most about the future?
The time will be coming for me to start medication and that does worry me; the thought of being reliant on medication to control the virus, the unknown affects that taking any drugs for long periods of time have on your body, how my system will react to the medication, if I will experience side effects or not – the list goes on. I know that most of
these are quite simply the fear of the unknown and I have no doubt that when the time comes to start medication it will be a fairly easy process, as I have witnessed and supported numerous friends as they have started their journeys onto ARVs, the medication used to keep the virus under control.
How are you treated?
Currently, as I am not on medication, I visit my clinic and see the consultant every 12-16 weeks; this involves a catch up chat, urine sample, blood pressure check, weigh in and then a round of blood tests. I also have a smear test annually. Then off I go until the next appointment. The clinic emails the results to me and I plot them on a spreadsheet and that’s it until the next time.
Once my blood work results reach a level where I require medication, I will visit the clinic in a slightly different pattern. I will visit once for blood tests, then once the results are in, then I will return to the clinic for an appointment with the consultant.
Can you be healed?
No. Once you are infected with HIV, it will be with you forever. There is much work being done to find a vaccine or cure, however as yet this is not an option.
How do you know if your medication is working?
The medication for HIV works by reducing the amount of virus in your body. Regular blood tests check the level of virus in your blood and then also the level of a certain white blood cell, called CD4 cells, in your body. If your medication if effective, your level of HIV will decline, while your CD4 count will increase.
What is HIV? What is AIDS?
HIV is the virus that affects the human immune system, once the system has been damaged by HIV you can become susceptible to certain opportunistic infections and diseases; these would then indicate the syndrome otherwise referred to as AIDS.
‘HIV and AIDS are terms that are often used together, and sometimes are used interchangably, though they are not the same thing. They are both acronymns, and are related.
H – Human: because this virus can only infect human beings.
I – Immuno-deficiency: because the effect of the virus is to create a deficiency, or a failure to work properly, within the body’s immune system.
V – Virus: because this organism is a virus, which means one of its characteristics is that it is incapable of reproducing by itself. It reproduces by taking over the machinery of the human cell.
A – Acquired: because it is a condition one must acquire or get infected with; not something transmitted through the genes
I – Immune: because it affects the body’s immune system, the part of the body which usually works to fight off germs such as bacteria and viruses
D – Deficiency: because it makes the immune system deficient (makes it not work properly)
S – Syndrome: because someone with AIDS may experience a wide range of different diseases and opportunistic infections’
REACTIONS & STIGMA
How did you expect friends to react when you told them?
I haven’t been fearful in telling any of my close friends; I felt confident that they would simply accept ‘me and it’. I was concerned that they would worry for me, for Jaye and so I armed myself with the knowledge and facts to support the fact that I am ok and that I will be ok!
How did you prepare before telling your family?
I told my Mum and sister the day I received confirmation of my diagnosis so I really hadn’t prepared; at that time I hadn’t read much, my knowledge was sparse and I was still in shock and ever so fearful that Jaye may be infected. When it was time to tell my father, I found it stressful and I really found that very difficult, I think because of the circumstances around my infection and diagnosis. It was also rather odd because anything to do with ‘sex’ just isn’t a natural conversation topic to have with my Dad!
Do you think perceptions have changed in the last few years?
I am not certain if perceptions of people living with HIV have changed; although I do think that the arena for more frank discussion of sex amongst peers is changing and so this can inherently only be a good thing for awareness around HIV and STI/STD in general. Sadly there is still a general lack of awareness and distinct lack of sex education but that is for another article!
Do you feel stigmatised?
I have only ever encountered stigma from the very people you would imagine to be most aware – those within the NHS! There appears to be a real lack of basic knowledge and I have encountered it numerous times. From a dentist, who actually got me to attend before their surgery was even open, to an A&E doctor who went the other side of the cubicle curtain to ask his colleague ‘how should I treat her?’. The response was rather stern but fantastic; ‘like any other patient!’
I am now working alongside the local HIV support charity and my local GUM clinic to help educate and inform GP’s and non-sexual health NHS clinics when dealing with HIV positive patients.
MY DAUGHTER, J
Does Jaye understand?
J has recently turned nine and I have actively chosen not to shelter her from my diagnosis. Her reading ability goes far beyond her age, and I never wanted her to discover a ‘secret’ or deny her the resource to be able to understand and comprehend. I believe she has an age appropriate knowledge of HIV; she understands that I have ‘bugs’ in my blood and that is why I see the doctor every few months. She also understands that Daddy isn’t here because he didn’t know about the bugs, and that they made him poorly.
Do J’s friends/peers know? Has she ever had any trouble – if so how do you deal with it?
To my knowledge, I don’t think any of her friends know, although I know that many of her friend’s parents do. As yet, there hasn’t been an issue, but as she gets older and enters secondary school I envisage that that time will come. I see it as my duty to ensure J has the knowledge and confidence to respond articulately.
How do you date? How easy is it to have relationships and when do you have the conversation?
I have dated since my diagnosis; but I have dated other HIV positive people. There are numerous websites for HIV positive people to network, meet and date – I have made some fantastic friends over the last 7 years this way! It is completely possible for a HIV+ person to date a HIV- person and there is support and medication available to help keep the negative person negative!
Personally, I haven’t dated anyone who is negative since my diagnosis but that is my choice and so I haven’t had to have ‘the conversation’! Time will tell, maybe one day I will – and that will be a whole new article!
Lizzie – (@FashionThing on twitter)