Disclaimer: The views and opinions expressed in this piece are the author’s and do not necessarily represent the position of Positive Women’s Network – USA. 

This blog originally appeared on A Girl Like Me and is reposted with permission

 6-1-2018

by Katie Willingham, PWN Policy Fellow, PWN-USA Alabama State Lead

Long Term Survivor day is coming up soon, a day when we celebrate the longevity, the courage, the strength and especially the wisdom of those who have lived with the disease for many years, through the days of lesser knowledge and fewer HIV meds, huge cocktails and greater stigma and fear. Long term survivors have shown us which medicines work and what regimens don’t, the effects of HIV on the body and mind over time, and what methods of prevention are most effective. We have learned much from them in the past and we ever benefit from their experience.

I sat and wondered just how many years did it take to become a long term survivor. I was diagnosed 18 years ago; do I qualify? After some thought I concluded that, yes, I am a long term survivor, to someone newly diagnosed, to someone who has been diagnosed for 5 years, 10 years or so, I am a long term survivor. I suppose, in a sense, we could all be long term survivors to someone, even if you’ve only been diagnosed for 5 years, to some people who have just learned about their status that could be more years than they think they’re ever going to see. To them, you’re a wealth of information, you’re alive and healthy, how? As a long term survivor you’ve learned that HIV is no longer a death sentence, that it’s become more manageable than most chronic illnesses like diabetes. You’ve learned the vital importance that adherence is to a healthy life, and that your health is largely in your own hands. You’ve learned that this doesn’t define you, because you’re more than a disease, so you have much to share.

I remember when I was first diagnosed being scared out of my mind and paranoid that death was just around the corner at the next cold, the next night sweats, the next anything that was less than perfect health or normal for me. I’ve come a long way since then. I no longer live in fear of death because I’ve learned about the virus and the science that suppresses it. I’ve learned what it means to be undetectable and how to maintain it. I’ve learned many things about this disease that I didn’t know when I was diagnosed. There are things that others can learn from me, and if I can educate others and they can benefit from my experience, then I think that makes me a long term survivor. Are you a long term survivor?