If you live with someone who is HIV-positive — whether they’re a partner, family member, or roommate — you may be aware of some of the struggles they experience on a daily basis. Barriers to their mental and physical well-being can include starting a new HIV/AIDS treatment plan, dealing with the social stigma of their HIV status, and coping with side effects of antiretroviral therapy (ART) or other treatments. An HIV diagnosis can be life-changing, but by being part of a solid support system for your loved one, you can help them maintain a happy and healthy life.
“It never hurts to have a good support system. Partners, friends, and family — the more the merrier,” wrote one myHIVteam member. “I was part of a video Zoom support group, which was helping a lot, so I recommend as much support as you can find,” another noted.
Following are five small but meaningful steps you can take to support an HIV-positive person in your life.
Going through HIV treatment can be overwhelming. There are many points at which your loved one may feel stressed: undergoing initial HIV testing, getting HIV medications such as ART, or even just having routine checkups, necessary blood testing, or vaccinations. It’s important to let them know you’re by their side every step of the way.
Getting medical care for HIV — just like any other condition — should never feel stigmatizing. Show the person in your life that you care, by acknowledging the sensitivity of the situation and showing them you’ll be there for the routine ins and outs of the treatment process.
“I went to a doctor’s appointment last week and waited an hour and 40 minutes past my appointment time for the doctor to get to the office,” wrote one myHIVteam member about a stressful medical appointment. “I also take my neighbor to appointments. She has agoraphobia. It takes a couple of days to mentally prepare for the appointment.”
Offering to take your loved one to and from their appointments can relieve the stress of a doctor's visit and help them feel less alone. They may also appreciate an offer to join them in meeting with the doctor so you can take notes, advocate for them, or provide moral support. Ask them what would be most helpful.
Your loved one may appreciate your help in getting their prescriptions, whether related to HIV care or other health issues. Alternatively, some pharmacies offer home delivery, so you could help set these up.
Navigating health care and administrative processes can add significant stress to your loved one’s mental load. You can provide peace of mind by helping with the necessary work to get their medication covered by insurance.
“My sister helped me figure out medication assistance, it was a lifesaver,” one myHIVteam member wrote.
Your loved one might experience fatigue as an HIV symptom. Health experts still don’t know if or how an HIV infection contributes directly to fatigue. It may have to do with the inflammation that comes with a weakened immune system. They may also experience fatigue from HIV indirectly through comorbid (co-occurring) health conditions, high stress, a poor diet, or insufficient sleep.
If you live with someone who is HIV-positive, keep in mind that they sometimes may not have as much energy as they used to. “I am very tired and sore today,” wrote one myHIVteam member. “It’s crazy busy with school starting. Two more weeks to get through. I’m so awfully tired.”
Your loved one may expend all their energy just getting through their daily necessary tasks. Any errands or chores that crop up on top of those can sometimes feel like too much. Although you shouldn’t take on more than you can handle, it can be helpful to offer to pick up a larger proportion of household chores or to run errands for them. Doing so can give your loved one the break they may need to get their energy back after a tough day.
One member wrote of their experience: “Sorry I haven’t been on lately, I’ve been tired and hurting from work and trying to catch up on my car and insurance bills … I’ve been hurting in my legs and arms: This weekend, they killed.”
One of the hardest parts of living with HIV or AIDS is the social stigma that can come along with the conditions. In fact, stigma is one of the most frequently discussed topics on myHIVteam.
Deciding to disclose an HIV-positive status is not something people take lightly. They know it can bring an onslaught of judgment and can change the way people see them. One myHIVteam member shared, “Too many people were told about my HIV status through gossip. But a touching moment was with an intelligent young woman living with one of my friends. Over brunch, she thanked me for making her laugh and reexamine choices of priorities. ‘I am not so stupid to be critical of things I don’t know,’ she said. ‘I know that you are HIV-positive, but you are one of the most caring people I have met. If it’s not intrusive to you, can we chat?’ We chatted about undetectable HIV and stigma.”
If your loved one is debating disclosing their status to others, be there for them afterward and be prepared to support them no matter how it goes.
It is extremely violating when someone’s private health information is revealed via gossip. Thus, people with HIV must be able to choose who gets to know about their status and when.
If they’re disclosing to a close mutual friend or a family member, do your best to support them and offer to be there during the disclosure if they’d like. First and foremost, though, make sure you’re deferring to your loved one about their preferences regarding how to go about the disclosure.
One myHIVteam member said, “My husband and I are that support source for each other. We’re both long-term ‘thrivers’ by this time, undetectable now for several years each. It comes up in conversations now and then, and we’re both authentic … and discreet about disclosure, but so far, none of our disclosure moments have produced anything negative. I think, for some, we are part of the destigmatization that everyone has to process. That seems a good thing to me. It feels good actually.”
Serving as a source of support for your loved one can help them feel more at ease and improve their well-being.
Whether your loved one is preparing for a difficult conversation with their health care provider, navigating their mental health, starting to take HIV medicine, struggling to take their HIV medicine every day, dealing with concerns about dating while HIV-positive, or anything else, they may want a sounding board for venting their thoughts and concerns.
Make sure to follow your loved one’s lead, and don’t make them feel obliged to share with you if they don’t feel like it. You may feel disheartened or worried if your loved one seems closed off and resistant to share, but know that it’s not about you. It may reflect their comfort level or any number of other factors.
“I have a small but wonderful support system, but I’m still very guarded about who I tell, what I tell, and when I tell,” wrote one myHIVteam member.
Another member shared, “I really hope everyone that is diagnosed has the power to inform who they want if they chose and when or never ... But it can be difficult. I haven’t informed any relatives; however, five close friends know and have been supportive. I only regret not informing them sooner, but I had to digest it myself and understand.”
It’s important to talk to your loved one about how they best feel supported so you can provide the tailored attention that they need. You can be a source of support for them no matter which stage of the HIV process they’re navigating, from diagnosis to treatment.
On myHIVteam, more than 35,000 people living with HIV come together to ask questions, give advice, and share their stories with others who understand life with HIV.
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