It’s 2013. It’s a New Year, a new me. Well hopefully a new me.  I have never been one to make New Year’s Resolutions but this year I decided to change that. I have never been in a long-term relationship. The longest relationship I have been in was three months and that is when I was seventeen years old. That was thirteen years ago, ack! I want to change that. 

That doesn’t mean I am going to hunt down any man who is willing to be in a relationship with me. What it does mean is that I am willing to put myself out there and be open to having a relationship. I finally feel like I am at a point in my life, where I am starting to be comfortable with myself and I am ready to share myself with another man. I have even started by creating a profile on a dating website. 

I’ve always wondered how I am supposed to meet people. A bar doesn’t really seem plausible. It seems like you go to a bar to find a one-night stand, not a relationship.  I am sure everyone seems amazing while you are drunk. My brother met his wife on a dating website, so at least I know of a success story. 

I am trying to put myself out there in other ways. I found an organization that has a number of gay sports leagues. There is a gay/lesbian yoga class every week and it’s only ten dollars a class. I’ve sent an e-mail to find out how to join. I am also interested in joining the gay/lesbian volleyball league so I am going to inquire about that as well. Not only will this help me be physically active it will allow me to put myself out there and meet people. 

Dating is going to pose a set of challenges. I am going to have to disclose that I am HIV positive, something I worry about doing. I follow many blogs online, women and men sharing their struggles about dating and disclosing that they are HIV positive. From what I have read it seems not to go so well. Great! 

Then there is the decision of when to disclose. Do I tell them on the first date? Is that too soon, will they head for the hills? Do I tell them after a few dates? There is no rulebook for this type of thing. I need a “You’re HIV Positive,How to Disclose for Dummies” book . It freaks me out thinking about it. Deep breath, deep breath. One step at a time. If I go into it with negative thoughts, then it probably won’t work out. I also don’t want to get my hopes up either. Oh so complicated it is. 

I have another problem. I also have mental health issues. That is a second issue I have to disclose at some point in time. Not only am I worried that the guy might think I am dirty because I have HIV, is he going to think I am crazy too? 

Last year I went through a group therapy program and I was diagnosed with Borderline Personality Disorder (BPD). At first I thought that meant I was going to snap at any moment and go all kung fu on everyone and everything. The psychiatrist quickly cleared that up. Nothing makes you feel crazy like the psychiatrist’s eyes bulging out at you. What it means is I have emotional instability. People with BPD can at times have a severely distorted self-image and feel worthless at times, most times.  We are usually uncertain about our identity and our interests can change very quickly. Oh yes, I can definitely relate to that. One moment I love you and then the next moment I can hate you. Whose cuckoo for cocoa puffs? I am! 

 Looking back at my unstable, intense childhood, I am not surprised I was diagnosed with this. My childhood was a crazy one. My dad was an alcoholic, who liked to punch holes in the wall and threaten to kill himself. My mom hid at work. My sister dealt with it by committing crimes with friends. My brother worked and went to school. I was all alone. Disclosing my mental health issues actually makes me more nervous than disclosing I have HIV to a potential partner. 

Oh and did I mention I also have major depression? I have had some really bad bouts of depression. Every year as I get older I’ve noticed my bouts of depression get longer, more intense, darker. How am I supposed to tell someone this?  “Hi, nice to meet you. I have emotional instability, I may love you one moment and then extremely hate you the next. I am HIV positive, have Borderline Personality Disorder, Major Depression and oh I was recently diagnosed with Asthma. How many illnesses is that? I’m not sure, I lost count,. . .  So when is our next date?” 

Unfortunately, HIV and mental health issues share something in common, STIGMA! With HIV I have had men ask me, are you clean? Meaning, am I infected with HIV.? Yes I’m clean, I shower daily, you jack ass! With mental health, if you have a disorder people may think you’re crazy, ready to fly off the handle. Both are serious issues and both need constant treatment. 

There isn’t a black and white answer on when to disclose. It’s unfortunately going to be a case of trial and error, learning from my mistakes. The important thing for me to remember will be that I am worth it. I am worth loving. If someone doesn’t want to date me because of a disease I have, then I don’t want to date him. Hopefully I can use my excellent customer service skills to read people, to help me figure out when I should disclose. “Thank you for calling customer service, if you are okay with me having HIV and Mental Health issues press 1. If you are not okay with these illnesses, press 2.”

January 9, 2013-

Isolation

Hi everyone,

I’m not going into detail about the shock I had and the isolation I felt when I was diagnosed. Most of us have probably had the same experience in that respect.

But one thing that made it worse is my mum. I always tell my mum everything and know she will always be there to support me. Until now.

I remember when I had first been to the GUM clinic and found out I had gonorrhoea, she wasn’t best pleased. I told her that it had been treated easily and would be gone in a few days. The next thing she says still comes into my head all the time,

“if you ever get HIV I will kill you”

At this point I didn’t know my status. Once I did, how could I ever tell her that. This made it feel like it was dirty and shameful. I couldn’t tell anyone because if my mum found out it would be the end.

All the sneaking around the next few weeks made it so difficult to keep it as discrete as I could from my mum. She has enough problems in her own life, she doesn’t want the burden of worrying about me too. My family aren’t the type of family to “talk” things through. We have the old us army mentality of “don’t ask don’t tell”.

Almost four years later, about six people know my status but not one in my family. It makes me feel quite disloyal but I think it might be easier that way.

My biggest support I received is from my beautiful amazing boyfriend. He’s so caring and has been there from the start of my diagnoses. My next post will be about how me and him came together.

Thanks for reading…

.....

January 13, 2013

How we met

When I was diagnosed I became extremely quiet and withdrawn. I was so terrified about passing on the virus to anyone else I was scared. I did a lot of research after this and educated myself a bit more on how to keep others safe; the internet can be so useful at times, can’t it/

I used to be quite a regular at the saunas around the north west, usually attending these once or twice a week. It was like an addiction really. So on May 9th 2009 I decided that to get over my fear of sex and armed with my new knowledge, I would pay a visit to the sauna and get it over with.

At 9.30 I told my mum I was going out (still living at home when I was 20). And I drove to Manchester. I got outside of the sauna and was really nervous about going in. The nerves were much worse than visiting it for the first time.

I went in paid, got out of my clothes and into my towel, along with the checking out of the other men getting undressed. I took a deep breath and opened the door thinking there’s no going back now and I headed for the showers to give myself a good clean. At this point I still couldn’t decide that I was going to go through with anything whilst I was there. 

I headed over to my usual radiator (yes I had a routine in the sauna) and thought I would just stand there until I felt ready. I was expecting to be standing there for hours because I imagined people knew I had HIV.

No more than 15 minutes later this man just appeared on the opposite side of the doorway to my radiator and that was it. Not a word spoken but we were in a private cabin. Just me and him. Kissing.

He must have thought I was odd as I wouldn’t let him touch my dic, or arse. I was scared that he might catch it. So I did all the prep. Lubed my arse up put the condom on and off we went. We spent about six hours in the private cabin and I was that scared I didn’t cum. I didn’t want it to touch anyone. After the first round we introduced ourselves and got chatting about a lot of stuff.

He was so caring and lovely I asked for his number once we were going and he gave me it!

And that’s how we met. Not the most romantic thing but I will never forget it. It’s been almost four years since that and we are even stronger together now.

It’s always a complicated thing knowing whether to disclose to someone or not but I just had to tell him. We spent a few days texting and arranged a date for the weekend (it’s a bit backwards fucking before the date, but never mind).

I needed to disclose before the date I was panicking about wanting to see him again after the date and him rejecting me. So on Tuesday 12th May at about 6pm I called him and just blurted it out down the phone. He wasn’t scared in the slightest, he had a friend who is HIV+ and knew all about it.

I was so relieved and happy that he didn’t freak out and run away. I couldn’t be happier.

Thanks for reading… 

These entries were first published on the blog of positivelymeandhiv which you can read here.  

Positively Me is a 25 years old guy living in Manchester, England.  You can follow him on twitter @PositivelymeHIV

Wouldn’t it be nice if everyone felt loved this Valentines Day? Even the people that we didn’t know? This is why the International Community of Women Living with HIV North America is launching LOVE POSITIVE WOMEN: Romance Starts at Home! This initiative is a way for each of us to express and show how a) we as women living with HIV are going to practice self-love, support and care and b) our allies will love us this Valentine’s Day. 

We ask that you create an ICW event for one or a thousand and declare how you will LOVE POSITIVE WOMEN. If you’re stuck for ideas here are some:

• Take a bubble bath
• Host a tea party in your home
• Bake cupcakes
• Have a slowdance party (in your living room)
• Take your favourite positive lady for dinner
• Make and send a valentine
• Get volunteer hair dressers and make-up artists to host have a glamor shots make over day
• Kiss your sweetie
• Write a love letter
• Make a valentine!

As you can see the sky is the limit! You can do anything, and we encourage everyone to participate.

We are using Facebook as a tool to keep you up to date on any local events that are happen in North America to celebrate the lives of women living with HIV. Once you have decided on your LOVE take a picture and post it on our Facebook wall. We will send it to the ICW members on Valentines Day!

Note: If you are interested in having an ICW event in your area and need support please or if you are a self identifying woman living with HIV in Canada or the United States and would like to join ICW North America contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Please visit our website to find out more about ICW.  

“Inner beauty is important: but not nearly as important as outer beauty.” 

Ellen Degeneres, Cosmetic Commercial

I recently had a Facebook discussion with a man who has started dating a positive guy. Brave in some ways, given the way we are generally shunned by those who are not poz, but he had issues. The man he’s getting to know has lipoatrophy, facial wasting from meds. He wasn’t sure about introducing his friend to his family, concerned about their reaction. 

I was one of the many poor suckers who were offered D4T back in the wonder drug days and the wasting I experienced was sudden. I didn’t notice a gradual shrinking of the fat in my temples and cheeks – it was simply gone one morning when I looked in the mirror to shave. My self-image was shattered in a million pieces. 

I was ugly. I was a monster. 

I live with the wasting and I don’t like it. I know people who had their wasting fixed, but for the majority of us, finding the 3,000+ dollars is more than we can manage. The pharmas, of course, would simply scoff at the idea that they cover the cost of fixing what their drugs caused, and as a “cosmetic” procedure, health plans (provincial and otherwise) won’t cover it. 

People tell me that I look great. While I smile and say “thank you”, I don’t believe them. I don’t see the face I once knew. I see the face of one of those old “AIDS victims” lying in a hospice bed, waiting for the end. My blood work might be fantastic, but the man I see in the mirror is hideous. 

I envy those poz people who are cherry-cheeked and healthy looking – even overweight. Their chances of meeting someone special are pretty good. My chances (and never mind that I’m 51) are not so marvelous. I think that even within the HIV “community” there is stigma about anyone who “looks sick”. We don’t want to be reminded of illness, we want to see ourselves as kayaking, gym bodied youths, toned, tanned and desirable. For those of us living with lypo, the illusion of desirability is just that – an illusion: and a poor one at that. 

We like to espouse the bullshit about “inner beauty”, but we live in a world that is more in tune with physical perfection. Those of us who don’t “fit” that model are the untouchables – even within our own subculture, the “caring” culture of HIV. 

And vanity is a part of the equation. There are very few pictures of me that I truly like. Again, people use words like “handsome” and “great” and I see “gaunt” and “skeletal”. 

Is this my “stuff”? Absolutely! And each of us only has our own stuff to deal with. But when I experience rejection over and over after I send a face pic to an attractive man on a dating (or even a hook up) site, and I don’t hear back, I know that it’s the wasting, not my personality. When a man does find me attractive I’m often suspicious, or I think he’s blind. More stuff piled on top of more stuff… 

I’ve joked that having lypoatrophy makes Halloween that much easier. It’s a mask I can wear to hide my true feelings – the pain I experience that I am a monster, a cast off in the general and the HIV worlds. 

Until we, in actuality, embrace the inner beauty that we say is so important; until human beings stop placing value on the external, those of us with lypo will never be truly accepted. We will continue to look in the mirror and see what we know to be true: we do not really belong.

Another Friday night and here I sit home alone. Just a phone call away is a very hot guy waiting for me to spend the weekend with him for some intimacy and hopefully good sex. I am conflicted because I know the moment I disclose my HIV status this insatiable attraction he has for me will come to an abrupt end.  Should I enjoy this feeling of being desired for a while longer before the inevitable? (Anyone having been in this situation knows exactly how I feel).

I have experimented with disclosure in many scenarios, on numerous occasions, including a waiting period to get acquainted and develop a relationship before disclosing. Now my preferred method is to disclose after a relatively short period of time as we get to know one another and always before meeting in person. That way I feel more proactive in being emotionally self protected from rejection in person, in control as I will ever be of the situation, while giving the person the opportunity to educate themselves about HIV, in advance, if they decide they want to meet me.

After disclosing I have heard far too often over the years a few standard  escape lines such as –“ I suddenly have to work this week-end”, “let me call you right back”. In so many words some of them bolted. Others were initially shocked by the news and felt in order to be politically correct, or being just plain out of control horny, they had no problem with my HIV status, until after the sex, when they frantically doubted the safety of condoms, questioned the need to get tested for HIV immediately  and just about everything else about me, which was not a concern before disclosure, including accusatory speculations about –“ What exactly did I do and what shady past do I have to be infected with HIV”. 

The hot guy waiting for my call has been looking forward to a possible meeting on the weekend as he said I was sexy, attractive,  interesting, intelligent, a bit eccentric and somewhat innocent and naïve,  in a good way, and he hadn’t felt so refreshed and  excited like this in a while. He most likely will feel devastated in this disclosure process as the others did, although there is no need. The others did not stay long enough to hear why it is not so scary. They heard HIV and panicked as he is likely to do, based on my past experiences.

I could share more experiences with disclosure and negative reactions. However now that I shared the incongruity in disclosure what needs to change is the public’s perceptions of people living with HIV. When fears are alleviated and stigma de-mystified, reactions to disclosure will change to acceptance and tolerance of people living with HIV with a state of HIV neutrality. As we are collectively impacted by the disclosure process, a collective effort is called for involving a continued effort to educate and the beginning of an effort to being educated about HIV realities.  Simply stated, there is no need to bolt when a person discloses their status.   Stick around, get to know us, learn about HIV. The attractive qualities are still there.

This all sounds  unrealistic with a lot of wishful thinking as I have observed over the years how insidiously dating terminology has changed to culminate into one’s right to  include such terms as “clean” and “disease free” in seeking a partner, which translates into “Stay to hell away if you have HIV”.

Now, for the million dollar question-  Will the hot guy still want to get together for some fun on the week end after I disclose? I doubt it, but I continue to have hope and I continue to disclose to move the process forward.

Submitted by the HIV Disclosure Project. You can follow them on twitter at @sexpartnersHIV or on Facebook here. 

Recently, the wonderful editors at PositiveLite.com took some of the Toronto-area contributors out for a lovely holiday lunch. Somehow, the conversation moved, as it does, to fetishes, and Bob suggested (jokingly…I think) that I become the resident writer at PositiveLite.com on fetishes.

We laughed about it; the thought of a young (yeah, that’s right), somewhat vanilla woman who recently came out of a nine-year monogamous relationship writing about fetishes was a bit humourous. However, afterwards I got to thinking about, and consequently talking about, fetishes.

The more I read about and talked about fetishes, the more apparent it became how common they truly are.

Depending on one’s definition of fetish, I know people with shoe and foot fetishes (retifism), leather fetishes (doraphilia), and S&M fetishes. There are all kinds of fetishes; tree fetishes (dendrophilia), cross-eyed fetishes, watching people sleep fetishes (somnophilia), rubbing up against strangers fetishes (frotteurism), teddy bear fetishes (ursusagalmatophilia), licking one’s eyeballs fetishes (oculolinctus). The list goes on and on. You name it, if it exists; someone likely has a fetish for it.

I have good friends who are exhibitionists, and several who are voyeurists (I mean, who isn’t?). There are whole websites dedicated to specific fetishes for god’s sake, yet we rarely talk about them. I began to wonder: if fetishes are so common and such a regular part of human sexuality, then why are they still so taboo?

Granted, some fetishes are really, really out there. I tend not to “fetish knock” as a rule, but I draw the line at anything that harms another living creature (or defiles them when they are dead). I can only conclude that fetishes are so taboo largely because they are sexual in nature and our North American society has a very clearly defined idea of what is considered “normal sexuality”, even if it is anything but normal.

This concept of “appropriate” sexuality is constantly shoved in our faces. Whether it is movies, magazines, sex-ed, music videos, or conversations, we are taught from birth what sex should look like; heterosexual (predominantly Caucasian), attractive, and not “too freaky” and anyone who steps outside of this is considered a freak, transgressive, or dirty (and not necessarily in the good way).

However, if you ask me North American society’s idea of sex is far more bizarre than autonepiophilia (sexual pleasure derived from dressing up or imagining one’s self as an infant). We are a society that is obsessed with breasts, but who freaks-out about breast-feeding in public. We are a society that continually objectifies women and portrays them as overtly sexual (or not sexual at all), yet we scorn women for being promiscuous or even for knowing what they like sexually; we may even call them sluts. We are a society that pushes soft core sex in movies and advertisements, yet gets up in arms about pornography.

We are so obsessed with sex as a society, that we will buy virtually any product that promises to enhance our sex lives, yet we ostracize those who are open-minded enough to know what they want and to seek it out. Yet, for a society that is so obsessed with sex, we certainly are uptight about it. We push sex, but are afraid to have real conversations about it or believe that real people have sex in “unconventional” ways. We are sexual hypocrites. 

This is why anyone differing outside of this sexual “norm” faces so much stigma; the queer community, people living with HIV, people with fetishes. It is because of this “normalized sexuality” that people feel forced to stay in the closet for lifetimes. It is because of this view that young women feel obligated to say “yes” to sex even when they don’t want to because they think otherwise guys won’t like them. It is because of this view that I know numerous people living with HIV that were told they got what they deserved because they were being promiscuous. 

It is because of this view that people may not access health care services, or be completely honest with their doctors, for fear of judgment of their sexual practices. It is because of this view that people are unable to live totally fulfilling sex lives or ask their partners for what they want in bed. 

We are a sexually judgmental, and consequently, sexually repressed society and I, for one, am tired of it. So, next time you find out someone’s sexuality extends outside your concept of “normal”, please, don’t be so fucking judgmental. Take a good, hard look at what you’re into, and if it fits within “the norm” maybe you’re the one who should ask yourself, “Am I the one who is a freak?” Besides, how do you know you don’t like something like catheterophilia (sexual interest in the use of catheters) until you try it?