My first introduction to bullying was when I was very young, before I had HIV and during the time I was living in Reading, England. If you want to see bullying at its best , this is the place for you! The hatred of people of colour and the class system of the wealthy, the middle class and the poorest was very evident and many children were warned not to play with certain other children. It is probably one of the main reasons I left England. When I last returned, I was on a train where a drunk man was saying terrible things to a black ticket collector who was just doing his job. I don’t know if or when I will ever go on vacation there again.

The first scene of mob mentality I ever witnessed was when I was travelling in our family car. I must have been roughly 10 years old. There was a large crowd of Reading soccer supporters on the road in front of us and my father told us to lock the doors, I was terrified. We tried to drive through the crowd and as we passed I saw many young men looking into our car. Eventually, I heard one shout out “it’s OK, she’s wearing a Reading hat” - they were referring to my light and dark blue, striped toque - and with that, they broke ranks and allowed us to pass. The next car was not so lucky and I watched out the rear window as the mob started to beat on the car and eventually tip it over, with passengers still inside.

People often say how school uniforms prevent class consciousness because everyone has to wear the same. For me, wearing a school uniform was a nightmare. I got on the local bus each day after school and because I went to one of the schools in Reading which had the highest rate of pupils graduating, I was envied and often bullied by kids from other schools. I was regularly squeezed into one corner of the bench seat, laughed at, pushed, spat at and even, on one occasion, thrown off the bus when the doors opened. I never told my parents as I was sure they would complain to the offending school and then my life would have been made ten times worse by the kids.

Almost twenty years ago, when I was diagnosed HIV-positive, it was during a time of some of the worst stigma in North America. Ryan White, the bullied school child with AIDS had recently died, Freddy Mercury only revealed his diagnosis at the end of his life and I heard a joke on Vancouver radio about “NBA stars clearing the way for Michael Johnson to dribble down the court”. My first thought when I was told I was HIV-positive was one of total sympathy for gay people who not only had to reveal their status to their relatives but also reveal their sexual preferences and then had to hope for understanding. I was afraid anyone would see my bottles of meds and “clue in”. I believe there is still an enormous amount of people hiding their HIV status today for fear of bullying.

In 1996, I was coming to terms with having HIV and was beginning to have thoughts about telling more people. The International AIDS Conference was in Vancouver and there was great reason for hope with new medication; there was an air of optimism. I had been in the conference all afternoon and I felt uplifted. I returned to my carwhich was parked just below GM place and there were leaflets left on all the car windows. I took the piece of paper from my windshield wiper and just stared at it. It was a Bible verse and it said to be prepared to go to hell. My heart beat rapidly and I felt like crying didn’t people realize how hard this was? Did they really think I wanted to be HIV-positive? I couldn’t get the leaflet’s words out of my head as I drove home. What kind of Christianity involved such hatred? Over the course of those summer months, I decided to fight the stigma and make my story public. I would certainly not take this lying down.

One night, my friends and I went for dinner at Cam’s on Davie. Upon returning to our car, we walked along the busy sidewalk and two drag queens opened the doors of Denny’s and stepped out into the street. Within a minute there was a screech of car tires and two men got out and went to the trunk of their car, one pulled out a tire iron and started to beat the drag queens to the ground, while the other kicked them. A large crowd gathered and started to pull the two men off and shouted at them to stop. They eventually ran back to their car and at that moment I realized that bullying is a very cowardly act, often carried out in groups or anonymously.

The last two incidents happened in the last year. I decided to put a video onto YouTube under the name hivgirl1. I chose this name because I thought people would find the video quickly by typing in a search for HIV. Within a very short time, I received unbelievably abusive remarks from one man and was totally shocked at his pure hatred. I realized that this must go on all the time and thought very carefully if or how I would reply. I decided to love my enemy and replied with total love in my comments: “so sorry for you anger, hugs to you!”, I replied. He continued, I replied: “Hugs xox” and knew the man must be getting really frustrated that he was not getting into a verbal battle. But then a wonderful thing happened, people who had seen the video started to write to him too, telling him he was mean and thoughtless. The community was fighting back, and not just the HIV community but others too, I was very thankful to know that so many were on my side.

The last incident happened on the weekend. I took my dog for a walk in the park behind my house. It is a park where dogs are allowed on grass but not on soccer or baseball fields. I was just in the middle of cleaning up my dog’s daily routine when I heard a voice shout at me from a white truck. “get your f****ing dog off the grass!”. I thought the man had misunderstood and didn’t see that I was cleaning up. I shouted back that I had cleaned up. Then the man just got angrier. I was astonished. Everyone walked their dogs on the grass and I never would allow my dog onto the playing fields, where the kids played soccer and baseball. I tried to ignore him but he kept on ranting and swearing. I had enough. I think I surprised him when I railed back at him and he replied that I could go back to England!

How quickly people pick something up about you and use it as a way of slandering you, I was thankful I didn't have AIDS tattooed on my arm. .As I went on with my walk, then I realized that I might meet up with this man again and that it would be wise to take his license plate and so went back to look at his truck.. he was already walking away from it with his golden retriever in tow. As soon as he saw me looking at the plate he asked what I was doing. I told him and he started to run at me. I quickly looked for something to defend myself with, but then realized I had a Doberman standing with me! The man dragged his dog towards me and only stopped when Ziggy walked and stood in front of me.

I am sure if I was a man, he would have hit me. He shouted “you’re just the same as my wife, she doesn’t know when to shut up either!” he said - all 6’ of him and 5’2” of me (with Ziggy I was more like 6’4”and buff!). I eventually put up my hand and gave him the “talk to the hand” signal and told him he was an obvious abuser and I felt very sorry for his wife.

That night I was watching TV at home and heard about another little boy who had committed suicide because of bullying and I seriously wondered how this would ever stop. Many bullies have serious psychopathic tendencies and they need psychiatric help. I believe many learn their anger from adults around them when they are children. It’s also from having no self-esteem and getting a fear from others by picking on weaker people. I think that in adults this behaviour is often bolstered by too much alcohol, it makes people irrational enough to believe in what they are doing. Unfortunately, post-analysis is not much use and we must rely on schools to teach children how to live better lives. Maybe if we looked at how our leaders encourage put downs of others through political ads, how torture is justified by many and how richer countries treat less developed nations, that might be a beginning.

A divorced friend of mine once told me about a dating site called “Plenty of Fish” (POF ). The name seemed funny and just the thought of going on a dating site seemed weird. But two years later, I was divorced too and I decided to investigate POF and some HIV positive dating sites.

fter checking out profiles and no faces on the positive sites, I felt drawn to the non-positive ones. I'm shallow but I was scared it might end up being someone I already knew. I was very wary that my HIV positive status would mean that no HIV negative man would be interested in having a relationship with me and it would just be a short time before I gave up on internet dating.

Completing the profile was the hardest part.. what could I say that I did for a living? I didn’t want to lie but “disabled” wasn’t even a category! I can’t remember what I put, probably “retired” but before I knew it a “chat” window had suddenly appeared and someone was trying to say hello to me. I soon found out that the “chat” windows often lead to discussions that were sexual and not really a chat at all but that might have been just POF and not other dating sites.

I loved making friends with the other POFers and soon I had friends all over the country: I was purposely doing this to avoid telling anyone I had HIV. I “met” guys in Montreal, then Winnipeg and Edmonton. It was easy and to this day I still have Facebook buddies in Edmonton and Costa Rica. However, I was receiving messages from closer to home and some caught my eye. A teacher in Calgary and I started to chat and I liked him a lot. He wanted to meet and I felt very uneasy.

Eventually, I decided I would have to tell him that I was HIV positive and see what happened. I told him I had a secret to tell him and he needed to know it before we could ever meet - I could see him on my webcam and he looked startled, he asked if my secret was that I was really a man! I didn’t know whether to laugh or be offended! Did I look like a man? I just asked him to read a message I was sending and to promise to reply to me, whether it be good or bad and then I waited. I was so nervous and felt this was the day I would find out what HIV meant to possible partners.

The next day, I went to the computer and there was a message waiting for me. I was afraid of opening it and felt really worried what it would say. I clicked on the message and started to read.. “I have to admit, I was totally shocked to read your message..”, I felt my stomach turn, I felt sick. Then it went on.. “thank you so much for trusting me and telling me”. I couldn’t believe it, he still wanted to meet me, I almost cried because the tension had built up in me and I was sure I would be given the brush off and it would be the start of a life where people were afraid of me. It was an amazing relief. I had met someone who was willing to find out who I was! Then he told me some of his secrets too and I realized I was not the only one hiding things. This ended up being pretty common on the dating scene.. everyone had a story. We met and after a few dates decided Kelowna to Calgary was too far to keep dating.

I was pleased that I could tell someone on the internet and I used it more and more. I was very surprised how it didn’t seem to bother men that I had HIV and I was absolutely astounded how many wanted sex and didn’t want to use a condom. I had to even point out that I didn’t know what they might have! It seemed for many the site was a way for women and men to try to get sex without paying for it but for others they genuinely were looking for a relationship.

There was one guy who was constantly bugging me to meet him and he told me how many housewives were bored and wanted sex with him! I was amazed at his egotistical attitude and it seemed a good lesson for me to tell him I was HIV positive. The next day he sent me back a message asking me what the hell I was doing on an internet dating site.. how dare I? I was disgusted - was this the level of people I was meeting?.. what was I doing? What did I expect? What was I getting out of it? I decided to leave the site and just have fun with the friends that I had always known. Gradually though, I felt like a third-wheel and became painfully aware that most of them had partners, except for me... and so I bought a puppy! (Editors’s note: yay for puppies!) It was great and I got exercise on walks and finally was chatting to real, live people, not internet faces (this is a great way to go if you really want to meet people).

I eventually met an HIV positive man at a fund-raising event and he was kind and thoughtful, I liked him very much but then his ex-girlfriend, who was HIV-negative, wanted him back and he realized he was still in love with her.. I was starting to feel a little hopeless.

The Positive Living Society held an annual Gathering and one of the workshops was a discussion on how to inform potential partners. The group talked about what had worked, what hadn’t, how to negotiate sex and the difficulties involved. We discussed telling people about viral loads and educating possible partners. Everyone had a different story and people were despondent about how they were fearful of being abused by people who became angry at your honesty. Sometimes, I think that people they met didn’t want to think about their own risky behaviour when they were confronted with someone who was HIV positive and the people became confused and annoyed.

The workshop attendees all wanted answers and there were very few. It largely seemed to depend on the luck of the draw as to how your partner reacted. Some were understanding, others were scared and others were downright rude or abusive. We all were happy to talk about it but there was no right answer - no support group for HIV daters. I felt incredibly sorry for young people who had HIV from birth and were now on the dating scene with their peers.

I went home and decided to give POF one more try, only this time I would have fun. I wrote that my job was “a Sasquatch hunter”, my interests were “skipping stones on the lake” and my idea for a great date was “checking out the tools in Home Depot”. This time replies flooded in and I was happy because I wasn’t looking for Mr. Perfect anymore, I just wanted to take it with a grain of salt.

I met one guy, Kirk, and we went out for the evening. He seemed different, younger than me but with a mature attitude and smart. I told him I had HIV and he said he just didn’t feel he could have a relationship but he told me he liked me, he was just nervous and needed to research it. I felt I would have probably felt the same way in his shoes. I was finally getting over taking it personally.

I stopped telling people I was HIV positive when I met them because, unless I was getting into a sexual situation, there was no need. However, one time I met a guy and he became much too pushy and things were moving way too fast, totally out of my control. I was so worried and was scared what the consequences would be if I told him I had HIV - would he hit me or beat me up? Luckily, I managed to pretend I had to go to the bathroom and managed to get out of the situation and I finally stopped using POF. I moved away to a small town nearby and felt truly happy.

It was when I decided to be on my own, of course, I finally met someone. I got a call from Kirk. He had been thinking about me and decided that he had researched enough to know he wasn’t afraid of me and that dating me was more important to him that being without me. He asked me to go on a date. We went and watched the Canada Day Fireworks and slowly we spent more time together and got to know one another.. we’ve been together over a year now.

What I discovered about internet dating was that it was important to meet someone and see if I liked them before telling them about my HIV status. I also found out that some of the dating sites were better than others but the more confidence I had, the less it bothered me if someone was not interested in me because I was HIV positive. I also found that you can get yourself into some scary situations because you come to trust the other person without even having met them. You have to get a plan of what your reaction will be to people being angry you are HIV positive and using a dating site.

My partner of four years, Lloyd was tested and, fortunately, he was uninfected. I later discovered I had been infected in 1989, five years earlier, in a relationship when I was single. Katie died at just nine months of age. Lloyd and I were together 18 years and he never became infected.

I don’t think I have to tell anyone how painful it is to lose a baby and how you question everything that lead up to the loss. I was looking for answers and very few came. (photo below courtesy of Denise Becker)

By the time I was 35 years old and before meeting Lloyd and getting pregnant, I had had a lifetime total of FIVE relationships that eventually lead to sexual intimacy (the relationships lasted: 7 years; 1 year and the other three were for about 3 months each). I firmly believe that I was not an overly sexually-active woman. I don’t know who transmitted HIV to me, I don’t know where he is. What little I know I have given to the Provincial Health Authority and they have been able to rule out who it is not.

I have many questions. What went wrong? Who was to blame? What if one of the men had known that he had HIV?

After considerable thought, I have finally come to this conclusion: ultimately, my trust in the System to protect me gave me a false sense of security.

I trusted my doctor to carry out the recommendations that Health Canada was making. If he had asked me if I wanted to be tested and had explained the risk factors and that at that time, anyone not using condoms could be vulnerable, then I would have given my permission to be tested. By not asking me, he made a judgment call which turned out to be wrong. I thought it was just one of the many tests done. I realize that it doesn’t excuse me for not getting tested earlier. Should he be jailed? Should I sue him? Should I have asked to have been tested earlier when I was on the pill and was single?

When I was in new sexual relationships, I always asked my partner if he wanted to wear a condom and if he had any illnesses. This was quite unusual but I had heard a talk show that recommended it. I expected truthful answers. I didn’t take responsibility for what I was doing, I left that on the shoulders of someone else, I just wanted to be thought of as desirable.

In addition, women have a very difficult time negotiating sex and using a condom, ultimately many women go with what a man wants. I admit, I could have said “sorry, no sex without a condom!” but I didn’t, I didn’t have the self-confidence. There were other diseases and illnesses around but I blindly trusted people whom I really didn’t know, and certainly had no idea of their sexual history. I was on the pill and what I was most worried about was getting pregnant. I didn’t ask to see HIV test results; I didn’t know if he had slept with anyone in the months before, I didn’t have an HIV test myself. I simply assumed everything was fine. Well, more fool me!   Katie and I dearly paid for my complacency. I was irresponsible and relied on someone else protecting me. I wasn’t any different than so many other people today.

So what if the guy who passed on HIV to me knew he had it? Well, certainly I think it is wrong if he did’t give me a choice of whether to have sex with him or not because any person should make decisions based on real time information.

Would I want to see a man thrown in jail for knowingly having sex with me and not disclosing his HIV status? Quite honestly…   No. It would serve no useful purpose in preventing people from getting HIV, in fact it would work in the opposite way and this is the reason why:

It was my belief, at that time, that anyone infected with HIV would not have sex without informing me, I didn’t even consider that people might not know they were infected. I thought there would be symptoms. I trusted other people to tell me, even though I had never had a test myselfNo one mentioned HIV because it was a sexual turnoff

Since then I have asked many of my friends if they have been tested and some say they haven’t because they don’t want to know. They are afraid if they test HIV-positive that no one will ever want sex with them again and it is easier to go on believing that they don’t have it. This is all due to good, old-fashioned stigma and people’s lack of knowledge of HIV, how it is prevented and the symptoms. Many would rather believe that others will be charged for being HIV-positive and having sex without telling their partners and that will ensure their safety, rather than being responsible and getting tested for the HIV virus themselves. It’s the simple truth. I know because I was one of them and now I am on the other side of the equation.

The current fear of those living with HIV is often totally out of touch with reality and is becoming more and more like the fear of leprosy. If you believe that the stigma of HIV has changed for the better in this regard, you are sadly mistaken. Most people don’t know how infectious someone is with HIV, whether a man can infect a woman more easily or vice versa, and what difference the medications have made to transmission rates.

We have replaced education of HIV with criminal charges and jail time. It is feeding our ignorance.

If anyone has a reason to blame someone else for their getting HIV, it is me. I have lost my daughter to AIDS and how easy it would be not to take responsibility for my lack of self-preservation. It doesn’t help when people’s ignorance is furthered by their belief in the protection of a law and that the criminalization of HIV will result in their safety.

Prevention, treatment, education and testing are currently the only ways to stop the transmission of HIV. Jailing someone with HIV may stop one person but how many others will be infected as a result of blindly trusting the System? Laziness seems more and more pervasive and shrugging off our own responsibilities has become the norm in Society today.

Quite simply Criminalization leads to Complacency. Let’s look for a better answer.

A month ago, I was driving to Vancouver for some medical appointments. At some point during the journey, in a mountain pass, I lost the radio station I was listening to and decided to put in a book CD. It was Eckhart Tolle’s “A New Earth” and I was looking forward to finally hearing it.

The first CD talked about the “Ego”, the voices in your head. The topic was interesting but soon I found Tolle’s monotone voice was making me tired. By the time I reached Merritt, an hour and a half from Kelowna, I could feel myself falling asleep. I stopped at the Visitor Information Rest Area, got a drink and some food and walked around for a while.

Once I got back in the car, I had a choice, listen to some “Our Lady Peace” or try Tolle again – CD#2. I slid the CD into the slot with the precursor that if Tolle made me tired again, I would change it for something “awakening”.

I believe the next two hours of that CD were actually pivotal in my life and I will tell you why.

I had no idea that for the last 17 years I had become so engrossed in HIV and the terrible story of what had happened when I found out my diagnosis (and that of my baby), that my life beyond that didn’t really exist except as a by-line. I had become the disease. It had taken over not just my body but my mind and soul.

That evening I got on twitter and had to write about my discovery because it was so profound to me and I needed to just let it all out (*thanks to the woman who responded and said that she could relate and had been feeling that way too).

So what was this profound enlightenment? It was that my story was, in some way, filling a need or want in me. In a world that had gone totally out of control, it gave me something to hold onto and I had continued grabbing onto it for years. I was scared to “let go” because I was afraid of going back to the person I was before. I felt when I was diagnosed with HIV, I was an uninformed, semi-judgmental person, someone who believed everything happened in perfect order, nothing got in the way.. I was totally blind to how life really was.

When I had the diagnosis of an illness without a cure, it had made me realize what was important, how material objects were nothing compared to friends and meaningful relationships. I “got it” and I could identify with others.. the disease had given me a whole new identity. Obviously, I hated the disease and how it had killed my baby daughter but now I realized that I had come to terms with HIV and had almost made friends with it and in fact, I was even nursing it. I wouldn’t even let anyone say anything bad about it – I was determined to fight the filthy stigma, which maligned HIV and then that became who I was – the fighter, the person who wanted to protect others: Super HIV Girl! People told me how strong I was to publicly talk about HIV and it felt good to be called “strong”, it stroked my Ego, the voice in my head that said “HIV is part of me and I will defend it!”.

By the time I reached Vancouver I was in a panic; many years of my life had been lost to this story, the thought of it scared me. I knew that in telling the story it would help others but I felt that I was drowning myself in the waters of HIV and that my true self was committing suicide. Even on Twitter, I had called myself “HIVgirl”, why did I do that?! I thought about it and knew that it was so I could contact other people who were in the HIV world and then I would feel like I belonged to the HIV “clan”, and it was so I could tell the story over and over and be told what a hero I was. It sounds like I am being hard on myself but it was time to face the facts and sometimes the truth hurts when we have to come to terms with it.

But what was causing this thirst to be acknowledged? Why did my ego need to be stroked?

When I was in my teens, my life turned very quickly from happy-go-lucky to confused and miserable. I am telling you the story below because it is a fact and not one to make you feel pity for me, it just happened.

I lived in Reading, close to London, England.   My older siblings had already moved away. My mother caught my father in one of many affairs and she finally decided to divorce him. In the following months they argued loudly and I saw my father hit my mother and push her around. He refused to move out of “his house” and was enraged, often muttering to himself. I became terrified of him and wedged books over my bedroom door so that they would fall if my father entered my room during the night to kill me or my mother. My mother told me not to speak to him and we all lived in the same house, not speaking for two years, until the divorce was finalized. In the meantime, unable to study, I fled the house every chance I got and my hopes of entering university were abandoned. My mother returned to Canada to be with her family and I went with her.

Until those dreadful years, I had a great relationship with my father and I was his favorite child. We did gardening together, we watched theatre and movies, he took me to the Saturday farmers’ market and we both sang along to the radio. After seeing him treat my mother so badly, I hated him. How quickly love turns to hate! I felt abandoned.

Nine years later I got HIV in a relationship, I had sex with a guy because I wanted to be accepted.

When my father was in his 70’s, we reconciled and I hid my diagnosis from him until finally my involvement in an AIDS conference in London, England, made it too difficult to keep the secret. His later prognosis of prostate cancer changed him; he finally became a much more caring, less angry human being.

I believe that HIV, the media interviews and public attention were a good thing for telling people about the stigma but now I realized it was somehow filling a huge void in me, making me feel like I mattered.

When I had heard the CD, I thought I would change my name immediately on twitter to my real name but then, after listening to Eckhart Tolle some more, it didn’t feel right either – it was a name given to me and was also the surname of my ex husband, it was not a name I ever would have chosen for myself, it didn’t describe who I was.

Finally, I decided on the name Ms. Crimson Lips. It sounded happy, fun and it had moxie. Yes! It described me perfectly. So that is why I now tweet under that name and blogged about things that really concerned me from all parts of life.

I am still trying to find out who I am but one thing I do know is that I am not this disease. It is an unfortunate event that happened to me, it has changed me but it is not the essence of who I am. I can let it go and be myself, a person who is learning day-by-day who she is and what she stands for.