Community Responses: The Hardest Part of Living with HIV
Last updated: April 2023
There is not a single diagnosis out there that is easy to accept, and HIV is no different. Unfortunately, HIV can be difficult to live with because so many myths and misperceptions still exist about the virus. The public largely does not understand what it means to be HIV positive, or what it means to be friends with or date someone who is living with the chronic condition.
Understanding what it means to live with HIV
The good news is that this is changing. Slowly, but it is happening. Through sites such as this one, and by people like us having conversations with our friends and loved ones, we are able to help more people see what it means to be HIV positive.
Still, living with HIV can be hard. To hear more about what is hardest for you, we reached out on the H-I-V.net Facebook page, asking you to complete the sentence: “The hardest thing about living with HIV is __________.”
More than 70 of you commented. Here is what you said.
Disclosing to friends and family
It makes sense that telling friends and family is scary. We never know how others will react, and we are not guaranteed that they will hear us and respond with love and understanding. It is possible that not everyone you tell will understand, but hopefully a few—or more than a few—will. We truly only need a small circle of people to understand us and our struggles, and any more than that is an absolute bonus.
"Talking about it with new people. I always get shaken up after telling people about my status. It is not that I am ashamed. It is just you never know how people would react."
"The stigma in finding people you can trust."
"Telling your friends and family."
Cost of HIV medication
It is incredibly unfortunate that drug costs, especially in America, are so high when it comes to certain treatments, like several for HIV. One way to take action is to review your health insurance and budget for the co-pays for the drugs you do need to take. You can also see if you qualify for patient-assistance programs offered by the drug companies. There is also ADAP, the Aids Drug and Assistance Program, which is a federally funded prescription medication program for people of low income who are living with HIV.
"Knowing that our healthcare system is holding a gruesome death over my head every single day. No pay, no live, no escape."
"The drug costs are unacceptable."
Dating and relationships
There are no two ways about it: dating while living with a chronic condition is hard. Many people are too quick to walk away from a potential partner who brings any added challenges. But guess what? There is no potential partner out there who does not come with a challenge or two. The right person for you will recognize that.
It is especially hard in today’s culture of online dating where people so quickly jump to the next. But if a true connection is present and the person brings a level of maturity and understanding, then the relationship stands a great chance of going the distance. Like several in the community mentioned: All it takes is some education and safer sex practices to make a healthy relationship for both partners.
"Trying to be in a relationship. Being single is hard out here. People are still so ignorant."
"Living single, because people who are uneducated can make you feel like you do not even belong in the world."
"Not finding a woman to love you."
Mental and emotional health
One day at a time. It is all anyone on the planet is truly given. We understand that it is hard sometimes to get up and face the struggle. But, we all have a choice. We can choose to do what we need to—which means taking meds and also taking care of ourselves—so that we enjoy this one precious life. It is okay to be sad, but you may regret it if you let sadness overtake you to the point that you miss out on all the good things that are possible.
"Making the choice each morning to get up and get on with life rather than stay in bed and wallow in self-pity."
"Taking my meds every day!"
Thank you for sharing!
We wish to say thank you to everyone in the community who shared about this topic. Without you, there is no community! We appreciate it, as we understand that HIV stigma makes it hard to discuss these important issues. For those who'd like to help others, you can anonymously participate in more discussions by joining this online HIV community!
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