The Ultimate HIV Guide for Friends & Family | SIDE by SIDE
2 Aug 2021

The Ultimate HIV Guide for Friends & Family

Is someone in your life living with HIV? Learning about a loved one’s HIV status can be hard to process and even more challenging to talk about. In this article we are going to break down everything you need to know to start supporting your loved ones living with HIV.

People living with HIV are tough because they often experience stigma, rejection, and shame when talking about their positive status. That can make them hesitant to share our status with anyone, even those closest to us. It’s a pretty normal initial reaction to want to keep it a secret. When someone shares their status with you, they’re making an enormous gesture of trust, and your response is critical to the future of your relationship.

How to respond

When someone tells you they are living with HIV, they believe that you are someone that they can trust to love and support them. How you respond is important. Here are a few tips to keep in mind:

  • Acknowledge the trust. If someone tells you they are living with HIV, thank them for trusting you with this private information.
  • Understand their needs. If appropriate, ask if there are any ways that you can help them. They might have decided to tell you their status because they may need an ally or advocate, or they may be facing a specific challenge and believe you can help. Some people might just need you to listen. Please don’t make assumptions about what they need. Ask.
  • Ask about disclosure. Some people are public with their status; others keep it very private. Ask how many people know and how private they are about their HIV status. Don’t ever disclose their status to someone else without their permission.
  • Reassure them. It’s essential to let the person know that their HIV status does not change any part of your relationship with them. Your actions will always speak louder than words.
  • Never stop learning. Please educate yourself about HIV because it’s a lifelong disease. However, many different treatments allow people with HIV to live long, healthy, and happy lives.

While the news of someone’s HIV status can come as a shock, you need to recognize that your role is to support the person, not belittle or shame them. Be conscious of how your words might positively or negatively affect the person’s trust in your relationship.

Understand the facts

The first step to supporting someone living with HIV is understanding the disease. Living with HIV can be an isolating experience, and you must be there for your loved one in their time of need. By continuously becoming more knowledgeable about HIV, you can create an environment where your loved one feels comfortable talking about both the physical and emotional aspects of this illness.

You need to know right now that HIV cannot be transmitted through saliva, sweat, or tears. It doesn’t spread through shaking hands, hugging, sharing toilets, sharing food, or engaging in closed-mouth kissing with a person with HIV. HIV is only transmitted through the direct exchange of specific bodily fluids, like blood, semen, and vaginal fluids. It is entirely safe to hug and hold your loved one.

We’ve compiled everything you need to know about living with HIV, from risk factors and prevention methods, treatment options, and more in our learning center. Check it out!

Listen closely

When talking to someone living with HIV, make them feel comfortable and avoid adding any additional emotional distress. It’s not your responsibility to convince them to share information about their health. They are free to disclose on their own or keep it private as they see fit.
When first learning about a loved one’s HIV status, it can be easy to feel bombarded or overwhelmed. One way you can help is through active listening – paying close attention to the other person and doing your best to filter out your own emotions. Asking questions carefully and gently to make sure you understand what’s going on, with patience and compassion.

Encourage treatment

A newly diagnosed person may find themselves at odds with taking the next step until they feel supported by those who love them. HIV is no longer the death sentence it once was due to modern medical advances. By getting linked early, starting treatment with HIV medication (called antiretroviral therapy or ART), adhering to said medication, and staying in care, people living with HIV can keep their virus under control and prevent the progression of infection. All people living with HIV are encouraged to start treatment as soon as possible after diagnosis.
Encourage your friend or loved one to see a doctor and start HIV treatment as soon as possible. Programs providing HIV medical care or help with paying for HIV medications are available. You can use our resource finder tool to get connected with an HIV Care Provider near you.

Help them build healthy habits

If your loved one is receiving care for HIV, they have been prescribed a medication, known as antiretroviral therapy, as a part of their treatment. As directed by the doctor, they must take this every day to manage the virus and avoid any setbacks. Ask them if they need any help creating a daily routine and keeping up with it.

It’s also essential that people living with HIV live an active and healthy life, including eating well and exercising. Social support and shared accountability are beneficial when making significant life changes. You can talk with your friend or loved one about making lifestyle changes together that will benefit you both in the long run.

Support disclosure decisions

When someone lives with HIV, they will have to tell others about their status from time to time, whether it’s their doctors, partners, or family members. It can be a daunting and emotionally draining experience. Not everyone reacts positively, and there may be a risk of physical or emotional abuse after disclosure. You need to respect the decisions of your loved ones and do not try to force them into making a disclosure they don’t want or aren’t ready to make. You should never disclose someone else’s HIV status to anyone else without their explicit permission.

When your loved one needs to tell someone else about their status, they might be more comfortable if you are there with them. You can help answer questions and share the emotional weight of the person they are telling. If this is something you are comfortable doing, make sure your loved one knows that you are willing to support them in this way.

Don’t let HIV control you

HIV is just a health status, not a defining characteristic. When engaged in treatment and practicing healthy habits, people living with HIV can live the same long, healthy, and happy life that you can. Don’t let their diagnosis change the way you treat or interact with them. Not every conversation needs to center around their health. Their status won’t hold them back from participating in social gatherings.

When people are first diagnosed, they become much more likely to experience anxiety and depression. Having a solid social support circle can be crucial to curbing these symptoms and helping them succeed with their treatment. By empowering them to focus on and appreciate the aspects of their lives that don’t revolve around HIV, you can help them strengthen the parts that do.

Find support for yourself

While it can be tempting to talk with your loved one about your fears and anxieties around HIV, doing so may make them feel like a burden to you. But, you are not alone. There are millions of other people just like you who are caring for loved ones living with HIV. It would be best if you had people to talk to and ask questions or discuss concerns you may have with people who have similar experiences.

When you feel anxious and drained, it is good to speak with a therapist or counselor. They can often help discuss your feelings concerning your loved one’s diagnosis and provide more information about HIV. Make sure to create a space for yourself where you can process your emotions. This is likely to include feeling angry, sad, helpless, and determined.

Make sure that you’re keeping yourself healthy and fit too. You’ll find that when you take care of yourself, you’ll be better able to support your loved ones who are HIV-positive.

Know your own limitations

It can be rewarding to help someone living with HIV, but also stressful. In addition to emotional support, you may need to help your loved one navigate complicated situations, like accessing health insurance or finding doctors. Just because this person trusts you to know their status doesn’t mean that you will always have the emotional capacity to provide the support they need. Everyone faces personal battles, and you can’t be there for your family and friends if you aren’t showing up for yourself first. Take time to understand your limits and take breaks, so you don’t get burnt out.

Never stop learning

There is no denying that caring for someone who has HIV can be a big job. But, with the right combination of knowledge, listening, and self-care, anyone can become a champion for their loved ones. This article should have provided insights into delivering the best care for your loved one living with HIV. Are you still feeling overwhelmed? Check out our learning center for more information!

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