As I enter my 28th year of living with HIV I have to say that I have learned some valuable lessons along the way, some good and some bad but all my experiences have happened for a reason. The thing is that while you’re in it you don’t know that. It’s not until you get from out the storm not only do you discover why you went through it but you recognize your strength for all you endured. I’m thankful I didn’t come away bitter and accept all the new traits now part of my building blocks. So as the New Year’s arrives and we start a new chapter I reflect on my experiences and share the 20 lessons I’ve learned about living with HIV.
1) I’ve learned that you’re either living or you’re dying and despite what you heard about HIV it’s not a death sentence. Yet there was a time when I simply stopped living and settled on existing. I had to recognize we all are going to die, that’s a fact but until that day how will I live with the life given to me. You’re either like the zombies in the TV show, The Walking Dead, walking in an aimless direction or you’re taking each day as a gift and cherishing it
2) I’ve learned the people who have rejected me because of this disease have missed out on having the privilege of knowing such a strong individual. They must be scared of that strength and their decision is something they have to own as I embrace everything about me. And in those lessons I’ve learned that anyone who has rejected me has simply left room open to be filled by someone who will accept me for me
3) I am beautiful. As simple as that.
4) I’ve stopped asking ’Why me“ and started to understand ”Why me’ as I have helped others to live with this disease by breaking the silence and talking about HIV. I didn’t know at the time I was someone else’s gift as through the years people have been made to feel less alone as they listened to shared experiences.
5) My doctor is my friend and if he’s not then he has to go. Just because he/she wears the white coat and has the degree we’re in this together. At one point I thought I had to submit to everything he prescribed or said but learned that my voice is just as strong as his. So if it’s working, then keep it strong but if it’s a one sided relationship then he/she has to go.
6) When I used to complain about taking medications a nurse gave me great sound advice. I was hoping for sympathy but she served me a spoonful of hard love as without blinking she told me, “If you have something that’s saving your life and its working stop complaining and take the damn pills.” Lesson still appreciated today.
7) Start dreaming again.
8) If you’re worried about anything killing you just try being best friends with your anger. Having this disease I have had many opportunities to be angry but after walking that walk I learned quickly it wasn’t getting me nowhere. Anger strips you down from the inside and clouds your dreams. I accepted that upon hearing my status I had the right to be anger but for me to be well I had to not let my anger guide me.
9) I’ve learned its okay to cry but to not let those tears create an ocean that I can drown me. Along with anger, tears will come but at a point I had to wipe them away and start heading back to shore.
10) Give myself a hug everyday
11) Sex is still good
12) Stigma is a two way street and don’t assume everyone will reject you because of your status. Yes stigma is real and people do inflict it on those who are positive but sometimes I have to recognize when I’m handing out my own dose of stigma. In this lesson I had to learn that not everyone who is negative is ignorant about this disease. This was a good lesson for me to learn as it helped with disclosing and most importantly it helped me in relationships whether friendly or intimate.
13) I’m more than HIV. It seemed that with the doctors, the pills and condoms shoved in my face HIV was all I would ever be. But in thinking that I wasn’t allowing myself to see the fullness of who I am. I may write and speak about HIV but the one thing I tell myself is not to limit life to a three letter word.
14) I’ve accepted where people are in their HIV treatment and what works for me won’t necessarily work for someone else. When handing out advice I have to check myself and accept that my treatment was designed for me and people react to things in a different way. So whether it’s advice, the way I keep track of taking my medication or anything related to my HIV, it’s mine and may not work for others. So I keep my judgments to myself.
15) I’ve learned as I approach my 28th year of living with HIV that it’s not a competition when others share their length of time. The one secret of those living with HIV is sometimes we play a one-man-up game where we trump others with how long we’ve been positive. We show our battles scars as if having HIV is a competition. It’s done in a non-malicious way but if anyone wins we all do for being able to proudly state how long we’ve been living with this disease is the true prize.
16) I learned that whether it’s my cd4 count, my weight or viral load- to heed the numbers but not let the numbers dictate my state of mind. Not saying the numbers are not important but developing anxiety around your numbers is not good. I learned to celebrate the good numbers and don’t stress if they will fall. Just keep doing what I’m doing. And if they’re dropping then I have to look at stopping what I’m doing that’s probably causing the numbers to drop
17) I’m not being punished by God or enduring any other revenge.
18) I can still cross oceans
19) Drinking chocolate milk helps the pills go down easy
20) I’ve learned to be open and accept anything good or bad that comes my way. And as I step forward even if there is no cure I know that my life will be the best one I can make. So I welcome my next milestone and embrace this journey we call life!