When you are newly diagnosed with HIV, there are two very important things to understand.
First, YOU ARE NOT ALONE! And, as every single one of the people we've interviewed as our Positive Profiles over the years have recommended, you shouldn't try to go it alone. Nobody is the same and people need different amounts of help and support and at certain times more than others, so we've assembled a list of support options here for you to see what many of the options are.
Secondly, YOU HAVE CHOICES! You obviously have the choice of what type of support you do and don't need but you also have the choice of providers. From physicians to peer groups to confidants, make sure that you choose positive influences that you can bond with and get along with.
Here are some sources that are either essential or that you might find helpful in assembling your HIV support network:
Primary Care Physician and Medical Staff
One of your first steps is going to be selecting a primary care physician. You will want to select a doctor who specializes in HIV care and treatment. This is important because the doctor you choose will need to be in touch with the tests, latest treatments, drug interactions and everything else associated with HIV specifically. Your first HIV regimen is your best shot so you'll want someone that is in the know. Make sure that you get along well with the staff also. There are many times when you might be seeing a physician's assistant or a staff nurse.
Aside from your primary care physician, you and your doctor may decide that other medical professionals should be involved. These professionals might include a psychologist, therapist, dietitian down to physical therapies like massage and acupuncture. All of these people should be in tune with people who are HIV positive.
AIDS Service Organizations (ASO), Community Based Organizations (CBO) and Faith Based Organizations (FBO)
Volunteer support organizations have come a long way over the years for people with HIV. There is a tremendous amount of knowledge and help of all kinds available to you if you choose to take advantage of it.
The first place that you should go to is an AIDS Service Organization in you area. ASOs, usually depending on the size of the metropolitan area served, can offer you services like case managers, social workers and benefits counselors who can navigate the red tape associated with getting any benefits you might be eligible for and also help you locate transportation and housing if you need that. Many ASOs also have food pantries. The professionals and volunteers at ASOs can recommend doctors and other health care providers who deal with HIV patients and are nearby.
Many Community Based Organizations are similar to ASOs and offer many of the same services. CBOs might be more comfortable for some because being "community based," they many times serve a particular community such as African American or Latino, for instance, that is more comfortable and familiar for them.
Faith Based Organizations have really come a long way in most areas. While some churches still are closed-minded to HIV there are at least a few, even in smaller metropolitan areas, which have gotten over the stigma. Find a spiritual group or church in your area that offers an HIV support group. Your ASO should be able to refer you to a Faith Based Organization near you.
Family and Friends
There's no substitute for having a family member or life-long friend in your corner. Someone to confide in, someone you know you can count on. Friends and family can help you in areas where others in your support network can't. They can go to doctor's appointments with you and be your sounding board because they know all about you.
Make sure that you are ready to tell them that you are HIV positive and also be as sure as you can be that they are ready to hear it. Remember that there is still a stigma associated with HIV to many so make sure the time is right. If it's not the right time to let those close to you know, try to start with a peer or support group. You'll find people in the same boat as you and will probably find new friends and relationships there.
Internet Chat Rooms, Blogs, Forums
If you want to stay anonymous for a while or are just looking for some answers to questions that those around you don't know, there are many sources on the Internet.
There is a lot of good information online, BUT there is a lot of bad information too. To be as sure as you can be that the information you're getting is good there are a few things to remember:
-Understand that much of the information, especially in "Forums," is pure opinion. Look for several sources to verify what appears to be someone's opinion before you take it for fact.
-Go to websites that have been around for some time - are established - and that appear to be objective without an agenda. That is where your best information will be. Steer clear of a site that is trying to sell something.
-Make sure websites with "Forum," "Blog" and "Chat Room" areas have an active moderator. The moderator's job is to eliminate or question misinformation and to block posters who continually misinform.
Remember that there is help and support when you need it from the sources mentioned above and always immediate help if you have a crisis from regional, state and national HIV Hotlines. To find a listing of those hotlines go to our website at www.hivpositivemagazine.com/hotlines.html and pick up the phone.
Copyright 2018, Positive Health Publications, Inc.
This magazine is intended to enhance your relationship with your doctor - not replace it! Medical treatments and products should always be discussed with a licensed physician who has experience treating HIV and AIDS!