The + and - of Online HIV Support 


Things sure has changed since the last time I was diagnosed with HIV. We’re talking about 1986 when the rates of HIV were low in addition to services offering support. Learning you’re HIV positive can be such a traumatic and life changing event, that it makes sense one wants to speak to anyone who can inform them of what lies ahead. In the mid 80’s there were no such thing as the internet, the ability to Google or online chat rooms. And what information available was called into question as it was still a guessing game on not only how what HIV was but how to live with it. 


Push the clock forward to today and now there’s so many resources at your fingertips, literally. Whether it’s to find  support, locating a new HIV specialist, learning about medication options or finding a romantic partner who may or may not be HIV positive but open to dating someone who is. 


Today we have message boards both moderated and un-moderated by individuals around the country who comment to each other about their HIV status. Like me, there are others who share their stories within a blog- providing their experience in order for people to relate or be inspired. Dating apps are adding a field for people to self-identify as HIV positive,  making it easier to reveal your status to a potential partner or new friend. And information pertaining to the community is available as it shares local resources available for those living with HIV.  


Yet like anything in life there’s negative and positives. Online support and information for HIV is no different than the real world as one learns how to navigate and locate correct and supportive information. HIV online support sometime comes with it’s own risk and rewards.  

The following are what I consider the plus and minus: 


  1. For those who like to remain anonymous about their status and lifestyle- this can be a way to have discussions that pertain to your situation. Whether through forums or online discussion- they can share without fully sharing personal information.  

  1. Those in rural communities and some metro areas often lack the proper access to HIV information. The internet can open this world and based on search- provide the necessary information one needs. It has the opportunity to lessen the feeling of isolation.  

  1. Dating can be difficult for those with HIV based on the stigma which exists in both the straight and LGBT communities. Along with the known online dating apps there are emerging ones specifically designed for those who are HIV positive.  

  1. One can research new studies being conducted within the field and learn about medications which are in development. This information can provide a hopeful outlook on what lies ahead in the future.  

  1. One of the greatest benefits is to create an online community which encourages you as you share information such as keeping regular doctor appointments, the positive effect of new medication you’re taking or sharing with people the good news of your t-cell or viral load numbers. In effect you have the ability to create a cheering section. 


And as stated there are also some downsides of online HIV support which must be taken into consideration.  

  1. Although some online support groups can be a great resource, they don’t have the same rules of a professional run group. Some groups may not be able to assure information you share will be held in confidence and discreetly. 

  1. Also one has to be mindful of who’s in the group or who’s running it. Advice given by fellow members and even the facilitator can sometimes be inaccurate. The information is sometimes only one persons opinion and not medically sound. 

  1. Online dating sites, even for those who are HIV positive may attract different people for different reasons. One may join to find a long term mate, but others may simple be looking for an immediate and one-time sexual connection. Also a risk for those who are discreet within their community, is having your picture with your status which can be shared with others locally online. 

  1. I feel one of the largest drawback of simply having your HIV support online is it can exasperate feelings of isolation, one of the precursor to depression. A balance should be in place to not only have online support but someone who can offer some type of support in person. 

  1. Another drawback is to the ease to use online HIV information in lieu of a real doctor visit or advice. It can be so easy to Google symptoms you’re having and try home remedies- but when it comes to your HIV health, this can be risky and unadvised.  


Of course there’s many plus and minus when it comes to online support. The secret as shared before is finding the proper balance to compliment your life. There are many reputable sites which has been in existence for years. Your role is to find who and what speaks to you and whether you trust it. It’s hard to argue the advances which have been made and online HIV information shows just how far.