This page is part of Pocket ART, an easy guide to HIV treatment.
The Pocket guides include small quotes about different aspects of HIV treatment.
These quote from HIV positive people or community advocates were edited from longer quotes used in the full i-Base guides.
Thank you to everyone who agreed to let the quotes about their experiences be used.
Each link below is to a page of quotations from the relevant guide.
- Pocket ART – quotes from introduction to HIV treatment
- Pocket QoL – quotes page from side effects guide
- Pocket pregnancy – quotes page from an introduction to HIV and pregnancy
As an HIV positive advocate at i-Base, 2015 has been an exciting year for our care.
The START study showed that it is better for your health to be on ART, even at high CD4 counts.
This was irrespective of age, gender, other health risks and where in the world you live.
Guidelines agreed. The UK guidelines made their biggest changes for over 10 years.
Two other studies (PARTNER and HPTN 052) showed how dramatically ART also prevents HIV transmission.
And HIV negative people using PrEP (in the UK PROUD study) were protected against HIV and reduced their anxiety and fear about HIV.
These three things together should help reduce the stigma that still exists around HIV.
ART will increasingly become the routine next step after finding out you are HIV positive. This is easier when using better drugs.
Starting ART can be one of the most empowering ways to deal with the shock of being diagnosed.
By taking control over this aspect of HIV, you can carry on with your life.
— Simon, London.
I was diagnosed in Feb 2014 after one low-risk experience. I knew immediately that I wanted to start treatment and I wanted to be less infectious to any future partners, even if we are using condoms.
I also learned from my support group that because I was diagnosed soon after I was infected, there may be additional benefits from early treatment.
When my first doctor didn’t offer me treatment, I asked for a second opinion and I changed my doctor. This led to me starting treatment when I was still within six months of infection, which may be important.
Since then, my experience of HIV – both at the clinic and from support organisations – has been really positive. And it was great when my viral load became undetectable.
I knew I was really unlucky in catching HIV but learning and understanding how the treatment works and then deciding to use it has been an important part of how I chose to move forward.
— Lenny, London.
I got a shock diagnosis in January 2002 and immediately worried about dying. I pictured myself as a person in the media adverts for African people with AIDS who were just bones and skin.
My viral load was 650,000 and my CD4 was less than 10. Therefore I had to start ART immediately.
I read the leaflets and could not believe I was on treatment for HIV.
Because my CD4 count was so low, the increase in CD4 cells caused TB to become active.
So I started on TB treatment. I asked the pharmacist to have the TB meds as an oral solution as I couldn’t swallow the large tablets.
Now, 15 years on, I take my HIV medication every day and at the right time.
— Memory, London.
We are both HIV positive and not using condoms is a special part of our relationship.
We are both on treatment and have no resistance. We don’t usually have other partners, but agree to use condoms if this happens, so that we would reduce the risk of STIs…
— Steve, Manchester.
I am positive and so is my partner.
I am happier to continue using condoms.
This is because I feel better to be in control of this part of my life.
At least I don’t have to worry about my health if he decides to have other partners…
— Paula, London.
I started treatment on a once-daily pill containing tenofovir, emtricitabine and efavirenz. I had nightmares the first night, but these went away. What I couldn’t get used to though was feeling dizzy a few hours after taking my pill.
Even though I took the pill at night, I could not sleep properly. Perhaps because of poor sleep I felt agitated during the day. Sometimes I need to work late into the night, but the dizziness after taking my pill would prevent me from doing so.
I continued for a few weeks, but was unhappy with the effect the pill was having on my life. So I switched the efavirenz to raltegravir.
My life quickly came back to normal. I am sleeping properly. No sweats, no tossing and turning, no insomnia, no weird dreams, no dizziness, no falling over when I go to the bathroom!
I am much happier, even though this means I take a twice daily treatment.
— Nathan, Cape Town.
My first reaction was to put off starting therapy for as long as possible. I tried to improve my immune system by stopping smoking and using supplements, until I realised that my best bet was to use ARVs. They are the only way to ensure my long-term survival.
After 8 months of resisting treatment I eventually started ARVs. I do not say that I gave in but that I became more clever!”
— Vladimir, St Petersburg.
No-one wants to take drugs every day and I certainly didn’t, so I put it off.
Looking back, I wish I had started sooner.
I still wonder whether the three years I spent waiting for my CD4 count to fall would have been happier and more active ones if I had started treatment at a higher CD4 count, when my doctor recommended this.
— Matt, Brighton.
was diagnosed with HIV in 1997 and had to start on treatment when I was still in shock. I discussed the pros and cons of each drug with the nurse but most of it went in one ear and out of the other.
I needed time to find out about the different drugs and side effects, but with a low CD4 count I needed to start treatment soon. The information I got from the clinic was detailed and complex.
I was lucky. I had a good network of
positive friends and got sound advice in terms I could understand.
Over the past 18 years, I have seen treatments become easier to take with far less side effects.
HIV treatment is not rocket science. You can easily learn about it. I am sure I get better treatment for my HIV because I understand what is going on. This gives me the confidence that I should live a long and happy life, just with a manageable illness.
I talk with my doctor and I take an active role in my choice of treatment. I always say if I have problems with side effects or adherence.
— Paul, London.
I was confused about how my clinic worked, even when I was on treatment. One day I asked the nurse to explain the tests and what a ‘good’ or ‘bad’ result might mean.
It was tremendously helpful. I used to be happy with doctors saying ‘everything’s okay’ but now I want to know details about a few key things – my cholesterol, my bone health, my liver and kidneys.
— Matt, Brighton.
I was very scared of treatment. I did not think it worked cause I had just arrived from Zimbabwe.
I came to the UK after my husband died and I needed treatment immediately. I told my doctor that I did not want to be on d4T and ddI and he laughed because these drugs were no longer used in the UK. It is amazing what the disparity of wealth does to countries.
I never used to read about the meds I was given but after my experience with efavirenz (which I changed) I now read every detail on every drug.
Now I tell everyone that the drugs are fantastic because they have given me a new lease of life.
— Hosanna, UK.
Get involved in choosing your treatment. It needs to fit to your life, schedules and routines as much as possible.
Being able to share with my relatives and close friends has helped me a lot. My boyfriend always asks me if I took the pills on time.
I’ve been taking HIV treatment for the last 20 years. When I started, no one would have imagined the choice we have now. I now feel truly optimistic about the future.
As new drugs become available, choices will become even more individualised. A good relationship with our doctors and nurses is important: we’ll probably need to see them for years!
— Xavi, Barcelona.
Part of the reason I started combination therapy was hearing the experiences of other people living with HIV and seeing how well they looked.
I am very happy on Atripla and don’t get side effects. I now run treatment workshops with African people in the UK. People want to know more about their treatments and want to learn.
— Winnie, London.
Side effect and QoL quotes
“After 12 years of treatment I’ve had my share of difficult side effects but none of them have put me off continuing treatment.
Diarrhoea and insomnia added to my depression, anxiety and agoraphobia. Fatigue from lack of sleep and anxiety have at times made me reclusive. I found psychological side effects are extremely hard to describe or quantify to a doctor.
It is definitely better to ask for help early. Asking for help at a time of crisis might mean a waiting lists to see a counsellor. Anti depressants can help but sometimes have their own side effects.”
— Mark, London.
“I tried efavirenz but it really was not for me. It was great at getting my viral load reduced, but the side effects were too difficult and I switched to etravirine.
Within days this was like lifting dark clouds and the sun coming out. I didn’t realise how much efavirenz was affecting me until I changed it.”
— Anon, London.
“I was diagnosed in January 2003 and my viral load was very high and my CD4 count was 60.
When I started my treatment I used efavirenz, tenofovir, 3TC and Septrin. I developed a rash and called my consultant immediately. I was told to go to the clinic and then to stop taking Septrin. So this side effect was from the antibiotic and not the HIV drugs.
I continued taking my ARV’s and had restless nights and vivid dreams. After two years my consultant changed my drugs because I was putting on weight.
I take my medication everyday, and the experience I have with these drugs is awesome, I call them good side effects. Why? Because I have a high libido, I become hyper energetic and it has increased my breast size (I know some people don’t like that, but it is good for me).
I used to have bad side effects.
Now I can proudly say I’m not experiencing them anymore and I’m happy with my meds.”
— Anon, London.
“I was very worried about the fat accumulation in my abdomen. Not only because of my physical appearance but also because the pressure from inside and the feeling of being full were very unpleasant.
I decided to do something about it. I looked for information at an AIDS organisation, then I talked to my doctor.
I changed treatment, and my diet – more fruit and veg. Aerobic exercise really helped. Swimming and cycling are my favorite activities.
I have started to feel better and I’m happier when I see myself in the mirror.”
— Anon, London.
“I was diagnosed via antenatal testing when I was three months pregnant. What a time to receive bad news! I had a lot to think about and at the same time start treatment straight away.
The support I got from my group was invaluable in helping me appreciate the treatment and take it as prescribed. The thought of having a healthy baby made me determined to follow everything in detail.
I had a bouncing HIV negative baby boy thanks to ART.
not need it for myself. My CD4 is quite good (above 600) and I had an undetectable viral load at the time of delivery.”
– Jo, London
“I’ve often said that having an HIV diagnosis does not change who you are. Like many young women I had always wanted to be a mother. In some way, having a positive diagnosis made me think about it even more.
I had my baby five years after I was diagnosed. That was way back in 1998. I guess I was lucky in a lot of ways because by the time I made the decision to have a baby I’d had a lot of peer support, information and met a lot of other HIV positive women, who also had either been diagnosed antenatally, or had children after their diagnosis.
One of the most difficult things during and after my pregnancy was the uncertainty about whether – even taking up all the interventions that were available to me – my baby would be born HIV negative.
I cannot describe my feelings when I finally got the all clear for my beautiful baby. All the worry, fear and uncertainty were definitely worth the wait!”
– Angelina, London
“When most of everything felt right, my health and relationship, having a baby, after more than 20 years since my last child, was the best feeling. After discussions with my partner and my doctor, I decided to have a baby. We did this while continuing with my current meds and of course not breastfeeding.
I was determined to do everything in my power to have an HIV negative baby. Combination therapy has fulfilled my dreams of becoming a mother again.”
– Jenny, London
“I am HIV positive. My partner is HIV negative.
We have two beautiful daughters. Both conceived naturally. Both, like their mum, are HIV negative
We initially considered sperm washing, but we would have needed to use artificial insemination. This was extremely expensive and involved travelling and giving my partner hormone injections.
This was not the way we wanted to have a baby.
We decided that the risk of transmission with someone who was undetectable for many years, extremely adherent and had no STIs was very low.
So we bought a cheap ovulation test and did it naturally… and it worked… twice! ”
– Mauro, Italy
“I have lived with HIV for so long that I don’t remember what it’s like to live without it. I found it difficult to be HIV positive in the beginning. But once I learned to live with it, I decided to start living my life again.
I then realised I could do all the things that I thought HIV made impossible. I though I could not live over 25 years, or ever have a successful relationship or have children!
So last year I told my partner, who is HIV-negative, that I would love to have a child and he agreed.
We talked about how to achieve this and the possible options. We settled on the least complicated option – unprotected sex during my ovulation period. In a couple of months, I conceived!
My pregnancy was relatively easy. My obstetrician strongly advised that I go for a vaginal delivery as my CD4 was very good and my viral load undetectable.
My baby was tested for HIV a day after he was born. He has now had several negative results. He is now 6 months old and growing beautifully.
My partner remains HIV negative.”
– Millie, Bristol
13 August 2017. Related: ART, Pocket ART, Pregnancy, Side effects.