Janine Brignola: Living an Exceptional Life with HIV
When you were diagnosed with HIV, how did you react?
My first thoughts were quite literally that I would die. I thought I am the worst mom in the world. I am carrying a baby inside of me that will not only get HIV from me but will not have a parent either, I thought of all the things I had done wrong in my life and this had to be the worst. I wanted to kill myself because I thought that would be better but I couldn’t do it and kill my baby too. After this initial feeling I then felt angry, not at the man who had knowingly and purposely infected me but at myself for being so naive and careless with my body and sexual habits that I allowed him to not wear protection with me, that I trusted him not do something to hurt me, that I believed him when we talked about STDs and HIV before we ever had sex, but mainly because I had been abstinent for two years and I had made a promise to myself that I would not carelessly have sex with another person ever again until we were tested together. I felt like I was so stupid!
How is life living with HIV?
Dealing with any illness is a growing process. You go through the same or similar stages as people go through when someone dies, but having experienced both the loss of my sister and being diagnosed with HIV; I can say that the process of learning to cope with the illness has been harder. When you loose someone you love it hurts like hell but there is closure in some weird way, even if it is as unexpected as my sisters death was. When you find out you have to live with a chronic illness that the majority of people on this earth deem to be a dirty disease, that people assume or insinuate you did something to deserve, or that people want to pretend isn’t a real and serious problem, it is like going from having open doors to brick walls.
I mean that if you try to live a life where you do not publicly disclose then you can’t tell anyone or only people you know without a doubt you can trust one hundred percent, the thing is though HIV is like a juicy bit of gossip and I have never met anyone that doesn’t have some kind of gossip in them, no matter how small. Then you are constantly thinking they know, oh God. Someone looks at you and you think they know, someone jokes about STDs or HIV, and you think they know, you go to a club or bar and feel like everyone is looking at you because they all know. At least for me it caused me to be so paranoid in part because I have always been a keep it real type of girl. Coming out and taking back that power, telling my own story, that is something that no matter what no one can take away, degrade, or tell me how to do and most importantly it is freedom from the bondage of lies.
My everyday life is being a really normal person that everyone seems to think cannot or should not be living in a place where the stigma and everyday ignorance about my illness determines how I am treated and being caught between two worlds of normal mommy to activist/advocate extraordinaire. On one hand I get to be this awesome HIV ass kicking chick and on the other I am like the way normal, covered in tattoos mom next door living in Nebraska and being like yeah so what I have HIV, fuck you! I end up being like a party favor for people, it’s like wow she must be super cool, and I totally am but I am like boring mom too. Up until about seven or eight months ago I didn’t really go out or have a life and people would meet me and try to hang out with me and be like she is so boring because I would always decline invitations or I’d hang out with them and I think I was never quite what people would expect.
So, basically, having HIV will weed out the not so good friends, the smucks who are looking for a little booty, and it will teach you, if you allow it to, that it really is okay to be yourself and to love yourself, mistakes and all.
Do people treat you differently when you tell them you are HIV positive?
Yes, I have more reactions than I could even tell you about but I will choose the major ones. I have had men be total jerks. I regularly am told by people who work in the field of HIV/AIDS that I just don’t look like someone with it. I have been told by others living with the virus that I dwell on HIV because I choose to talk about it and educate people. I have had nurses and doctors treat me like crap, I have been told to kill myself, people on my YouTube channel are brutal, but my favorite is how my so called best friend acted when I found out I was positive. I was about three months pregnant and my “best friend” told me that I was selfish and should have an abortion because there was a .04% chance I could have passed the virus to my unborn baby, who by the way is five and negative.
What advice do you have for those that don’t want to be tested for HIV?
I would say that I totally understand and empathize with the fact that someone could be so scared that they would not want to be tested and that sometimes we feel like the fear of the unknown is better than the fear of knowing. It takes a lot of courage to face our fears. When you do you realize that not only was the fear silly but it is one of the most empowering things a person can do. You realize there is nothing you can not do.
And as far as the actual medical side of it goes you could think of it like this, do I want a disease that I could live an awesome, normal life with or would I rather allow a fear of knowing be the cause of what could kill me? The sooner you get tested and if it happens that you are positive it is better to know you have HIV and start meds if you need them or be in the care of doctors because you really can live with HIV. So wake up and go get tested, I mean do you want to be the cause of infecting others, do you want to be sick and miserable? HELL NO! You want to live and enjoy life AND YOU CAN. Knowing is better!
What advice do you have for those living unhappily with HIV?
I really hope this does not come across as being harsh but I am just one of those people that like to keep it real, that said there is nothing you can do to change the fact that you have HIV. Being mad about it or at the person who infected you, worrying about retribution, stressing about the mistake you made, asking “what if”; all of that will get you no where. You can not change that you have HIV. You will not wake up tomorrow without it. You will not have a normal life if you just pretend, so dwelling on all of that does nothing but stress you out, make you unhappy and make you hate your life. If instead you concentrate on the lessons you learned, the people you love, and the people who love you you’ll realize how beautiful life is. You stop taking things for granted and you stop worrying about your past mistakes. If there is someone in your life making you feel like you are less than, like you are damaged goods or if someone is just not loving you and treating you right don’t take that shit! Seriously!
There are so many people out there that are going through this and I promise they will help you, they will support you, I will help you. If you want advice about medical issues, if you want someone to listen who knows what you’re going through, anything at all you can e-mail me and I promise I will answer and do anything I can to help you (It may take me a minute to respond because I am a mom and have a really busy life but I WILL) firstname.lastname@example.org AND REMEMBER YOU HAVE VALUE, YOU HAVE WORTH, YOU ARE NOT A MISTAKE, YOU ARE PERFECT HOW YOU ARE,YOUWERE CREATED THAT WAY, AND NOBODY ELSE CAN BE YOU SO SHINE BABY, SHINE!
- Can You Keep HIV From Becoming AIDS? (everydayhealth.com)
- Getting Past HIV Denial (everydayhealth.com)
- Living Longer With HIV (everydayhealth.com)
- An HIV home testing kit won’t give you emotional support | Bisi Alimi (guardian.co.uk)
- Wrap It Up: FDA Approves First Ever At-Home HIV Test (bossip.com)