Tips to Kick Start Your HIV Information Gathering
Getting Started on HIV Research
By December 3, 2012 353 1 1
Gary McClain, PhD, is a therapist and educator who works primarily with individuals living with chronic medical conditions, as well as their families and caregivers. He has written extensively on health and body-mind-spirit topics, including a regular column on mental health in HIV Plus magazine. He maintains a website, JustGotDiangosed.com, with information and inspiration for newly-diagnosed patients.
Staying informed about your condition is an important aspect of managing your health. But getting started on the information-gathering process when you first learn you are HIV+, and staying informed as you move forward on the treatment journey, is not always so simple.
Challenges to Getting Info
First, the fear factor. Getting informed can be scary. You may be concerned about running to information that you don’t want to know, and discouraging yourself at a time when you are feeling pretty discouraged anyway.
And then, all that information. You may be running into information that may or may not be relevant, or that describes a very limited number of patients and not is applicable to the majority, like certain side effects. You may read information that is based on the experiences and opinions of one patient, or professional, or not-so-professional, and that is unreliable. You may read information that is just plain not true. Or that is so full of medical jargon that you don’t know what to do with it (like with the package insert that comes with medications).
Books and brochures may be biased, or hard to understand. And the Internet is a “Wild West” of information from all kinds of resources, reliable and unreliable. Yet, one website may, at first glance, look as credible as another.
But still, information is power. The more you know about HIV, the better prepared you will be to integrate your diagnosis into your life and to participate in decision-making. And there is a lot of great, useful, trustworthy information out there. But how do you get started?
Kick Start Your Information Gathering
First, talk to a doctor. If you learned that you are HIV positive through a self-test of some kind, get in touch with your physician right away. Let you doctor know the test results and have a talk about next steps. If you learned your diagnosis from some testing that your doctor performed, then you’ve most likely already had this discussion. And if you don’t have a regular physician, then find a physician who has experience in working with HIV+ patients. You can do a web search for physicians, and include HIV in your search criteria, or call physicians that you are aware of and ask their staff if they work with HIV+ patients.
Ask your doctor questions. It can help a lot to come up with a list of questions to ask your doctor, or his or her’s nurse or physician’s assistant, while you are there. Also ask your physician for recommended information resources. Your doctor may have printed information like brochures for newly-diagnosed patients. He or she may have recommended websites with HIV-related information.
Do some searching on your own. The government information website on AIDS, www.AIDS.gov, is a great site, with a lot of information, including a section for individuals who are newly-diagnosed. This might be a place to begin your information gathering. Another helpful website is www.thebody.com. Your state or local government may have additional HIV-related resources.
Consider joining a support group. Many communities offer support groups for individuals who are newly-diagnosed with HIV. These groups may be offered through local hospitals, the local health department, a community mental health office, an HIV organization, a local LGBT organization, or even a church. Joining a support group is a great way to connect with people who are on the same journey and to share information.
Keep notes. As you gather information, it can be helpful to maintain a file, either online or a paper file, with the information that seems most helpful or that you have questions about. You may want to discuss some of this information with your healthcare team.
Are You Ready to Start Researching? How to Know
Some people don’t want to know much about HIV, at least not at first, while they deal with the emotional reaction. They let their doctor tell them the basics, and ask for their doctor’s advice, when they are first diagnosed. If you are feeling overwhelmed, you may want rely on your healthcare team at first, and gradually start adding to your knowledge over time.
On the other hand, others jump in and quickly and immerse themselves as much as possible. This can be empowering. But it can also be confusing or scary if you are only running into information that is focused on symptoms, side effects, and potential outcomes.
The best approach is your approach. Start slow, or not so slow. Focus on the basics – treatment options, wellness, and taking care of your emotions. Bookmark sites that seem helpful. Read books and brochures.
Consider taking a friend or family member along for the ride. They can help you digest what you learn and give you some emotional support. This is a good way to start building your support network.
Information is power. But that doesn’t mean that you have to feel overwhelmed. Give yourself time to gather information at your own pace.
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