I was started on HIV treatment in 1998, just over a year after my diagnosis. I was still in Italy at the time and finding it extremely hard to come to terms with my diagnosis.
Treatment was pretty new then and in Italy there wasn’t any information available for patients. All I knew about treatment was an article I found in a magazine I was reading in the dentist’s waiting room. The article was an interview with Magic Johnson on a new ‘miracle’ cure for HIV. There was a picture which showed 10 different bottles of drugs. I kept the article folded in a secret drawer and I would take it out from time to time and look at it with a sense of disbelief. Was it true that HIV could be treated? Would I be given the drugs? The rumors from the hospital corridors were that only ‘deserving’ patients – patients who could be expected to be compliant with this very expensive and complex medical regimen- would have access to it.
My CD4 count was rapidly declining and so the doctor informed me that I had to start treatment as soon as possible.
I wasn’t asked how I felt about it, or given any explanation on what was the aim of treatment, if it would have worked for me and how. I had no knowledge about the virus. I vaguely understood that CD4 were important for the immune system and I had never even heard of Viral Load counts or anything else. Obviously I was very anxious about this mysterious treatment. When I dared to ask my doctor about possible side effects he shouted at me, annoyed: “Just fucking [sic] take it!”
His tone and attitude were telling me (or at least this was what I heard in my head): “You probably deserve to have this awful illness, you should be grateful we even bother to give you medication. How do you dare ask all those questions?”
I don’t know if it was the nerves, or the appalling communication skills of my doctor, I felt really confused, when I arrived home with all those boxes of pills, which I couldn’t pronounce the names of. I had to hide the pills in fear somebody from my family would see them.
Anyway, I started taking the medications. It was a lot of pills. When I went to the first check up appointment, after a couple of weeks, I was feeling really awful, nauseous, and tired.
I told the doctor: ” I feel terrible, it is a lot of pills: I take 3 of these 2 of those and then this one on an empty stomach and…”
The doctor looked at me horrified:
“You are doing it ALL wrong! You have mixed the pills up!”
He called other consultants into the room, sent for a nurse…everybody started running around looking really worried and freaked out. Apparently I had overdosed some medications and not taken enough of another. It was a surprise to everybody that I didn’t have a really severe reaction.
The doctor start shouting at me ‘What did you do???! This is really dangerous, you know!” He asked a nurse to take my blood in a hurry. I started crying, in fear, terrified. I hadn’t even told anybody about starting treatment. I couldn’t stop the tears flowing. While the nurse was taking the blood she was trying to console me, telling how much she wished they would find a cure. She seemed the only human person there. I couldn’t stop crying. The doctor started telling me: “But, what is the matter with you?! I will make a referral to psychiatric department.” Somehow I managed to tell him through the tears that I didn’t need to go to a psychiatrist: I was just scared. He decided to stop the treatment for a few weeks, and when I was started again later on they wrote everything down on a piece of paper for me. This time I took them right. It was really hard, 18 pills a day, some with food some without food. I had to wake up in the middle of the night to swallow some of them. Nobody had explained anything about the importance of never missing doses, in order not to develop resistance to the medications. So I just took them when I could remember.Sometimes I would miss two or three doses in a row.
I had minor side effects mainly a tingling feeling in my mouth, always thirsty, my skin was dry and flaky, and my lips chopped, my toe nail started growing inwards. But I was lucky, those were all minor and they stopped when I changed treatment. I was just really fortunate that in spite of taking Indinavir and d4t I never had any Lipodystrophy, which would have stayed even whenI switched treatment.
When I moved to London the year after I was told for the first time that I had an undetectable Viral Load and what it meant. It seemed like a dream. I started to understand how treatment worked, reading magazines and booklets I found in hospital. By going to support groups at Positively Women I learnt from others how to take the pills, little tricks not to forget doses. I also learnt it was my right to discuss my treatment with the doctor and negotiate something that suited my lifestyle better. Thanks to the support of treatment advocates I asked my new doctor to change my treatment. She was initially resistant: her point was my ‘numbers’ were OK. She told me:
“I can not change your treatment because it is working”
“It is working for who? “ I asked.
I explained that taking 18 pills a day was impossible and I kept missing doses. After a lot of insistence from me I was finally moved to Nevirapine and Combivir, 4 pills twice a day. It was an incredible change. At last I was able to go out without massive pill boxes rattling in my bag I stopped worrying about constantly missing doses and feeling I was my worst enemy, because of my incapacity to take the treatment right. .
I have been on treatment for almost 12 years now, and I have also become a treatment advocate. I try to support other women to learn as much as possible about treatment, so that they can be in control of their health.
The treatment I am taking now is really working for me, it is only once a day, and I have absolutely no side effects. It is almost a miracle and I feel really lucky to have now a doctor who really listens to my concerns and always discuss all aspects of my care with me.
The saying: “Knowledge is power” is particularly appropriate applied to HIV. Learning more about the virus and what I can do to counter act it has really helped me in feeling I have some control over HIV. I know the medical system has not overtaken my body and my life.
Supporting others about gaining more understanding of HIV & ARVs has also helped me increasing my sell-esteem and feeling I am a valuable member of the community of PLHIV.
If you are interested in becoming a treatment advocate or just know more about treatment, go to IBase. They organize great trainings which are all run by people living with HIV who have developed an in-depth knowledge about treatment and also know how to make things easy for those of us who don’t feel too confident about reading medical research.
Even if you don’t want to become a treatment advocate, or you don’t live in the UK, IBase has a great website were you can ask questions on line and download lots of booklets and resources, completely free for people with HIV.