What advice would you give to someone who just learned they’re living with HIV?

That was the question POSITIVELY AWARE put to its followers on Facebook, Instagram, and Twitter. Drawing from their experiences, here are some of their heartfelt answers.

“It may be a shock, but it’s not the end. Connect to care and begin treatment. You can live a rich, fulfilling, long life. You are not alone in this. Connect with others—either in person or online—who are also positive. I attend a weekly support group of positive men. At first I went just to know I am not alone. Now it is more about friendship, companionship, support, fun, and love.”

“Know your options. Find a group and/or therapist to work with. See a doctor to discuss the best treatment options and talk to them about the miracle drugs that can keep one alive. Know that there are hundreds of thousands of us living (fairly) normal lives. READ. READ. READ.”

“Create a music playlist of fun, high-energy music for the tough times.”

“Do not isolate. Get out of the house and allow the people you love to support you. Look for an HIV support group. Engage with a medical professional.”

“I’d tell them to take a deep breath and know it’s going to be okay. Right now in this moment, it is absolutely acceptable to cry, yell, to feel all of the emotions that come welling up. Just don’t stay in those feelings forever. It’s okay not to be okay in this moment, because at some point you will look back and realize how this moment made you stronger. Then seek out support from a friend, loved one, social worker, whomever can help you navigate through a tough time and help you find the services and support you will need to thrive. Then continue forward into an incredible life.”

“I would say, this sucks. But HIV is not your fault. And then I would repeat what was told to me when I was diagnosed: HIV is not a death sentence. This isn’t the ’80s or the ’90s. If you take your meds and do what the doctors tell you to do, you’re going to be fine. You don’t have to do it alone. And I promise, you will laugh, you will love, and you will have amazing sex again. Life doesn’t stop because of an HIV diagnosis.”

“I would simply say... I love you and can I have a hug. And I would leave it at that.”

“Take a deep breath, and know you are not alone. HIV is simply a virus that can be managed with medication. You can live a long productive healthy life. Connect with health care, take care of yourself, and follow your dreams. You are amazing; having a virus doesn’t change that.”

“Find a good doctor knowledgeable about HIV, possibly a suggestion from a person either who is HIV positive or someone who knows a doctor (or practitioner) they would recommend. Read up on HIV from reliable sources such as Positively Aware or the CDC. When you do see a practitioner, make sure you’re comfortable with them. Prepare for your appointment by making a list of questions you’d like answered. If you don’t understand the answer, ask it again and make sure you do understand. Don’t hesitate to take notes. Also, ask for a copy of your lab results or write them down. Make a folder or binder to save them and compare the results each time. And don’t worry; all will be well. Just take your meds each and every time. If you need a reminder when you need to take them, make a system or get an app.”

“I would tell them to share their diagnosis with good friends and family. When I was diagnosed in 1997 I kept it a secret from almost everyone. It made my life harder. But the worst thing it did was make me feel ashamed. When I became more open with my status I felt so much better about myself. Not to mention not having to hide doctors appointments, pills, etc. Yes, some people won’t take it well, but most people who care for you will be supportive. I would also tell them to network with other HIV-positive people.”

“Number one, I’d ask them if they have eaten today. If they say no, I’d take them to eat. They need good Southern soul food!”

“I would tell them to refrain from wishing for their ‘normal’ to return. Instead, begin to create a new ‘normal’ that is filled with promise and longevity. Adhere to your medication regimen and create a routine that brings balance to your body, mind and spirit. Living with HIV is no longer a death sentence.”

“Anything goes wrong with your doctor, see someone else. If they’re not doing right by you, kick them to the curb and move on. It’s all about surviving and thriving, not groveling and apologizing.”

“HIV is a medical diagnosis, not a hijack of your personal identity. Take your meds, eat healthy nutritious food, exercise, get your blood work done, and see an infectious disease or HIV specialist as instructed. Enjoy your life in a way only those of us who have been confronted by our vulnerability and mortality can do.”

“Your life is not over; you get to start living. Don’t be afraid to find another doctor if the one you have is unknowledgeable or shaming. There will be bad days, but there will be good days, too. Choose a time of day to take your meds that you’ll be able to most consistently take them, and set a daily alarm to remind yourself. Don’t be afraid to learn about how HIV works and how your meds work. If you have any doubts, ask all the questions you need. Most importantly: be your own advocate! It’s scary as hell at first, but no one will take care of you like you will take care of you. Educate yourself. And do not wait almost four years to try [mental health] therapy, like I did.

Also, you’re still valuable and have worth. Having HIV doesn’t change that, and knowing your status now gives you the opportunity to not just survive, but thrive and be better than you ever would have been before. Use it to empower yourself and learn about yourself. Saying, ‘I have HIV,’ or ‘I’m HIV positive,’ will become easier over time,  I promise.”

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