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Table of Contents
- Normal Feelings
- Get Help and Support
- It Is Better To Know
- HIV and Women
- Making a New Start
- Useful Articles for Newly Diagnosed
Getting an HIV diagnosis can feel like the worst news in the world. It is common to feel anger, fear, confusion, shock, grief, depression, or other uncomfortable emotions. Even after you have known for some time and think you are coming to terms with the news, it may suddenly hit you all over again.
The first step in getting through this difficult period is to understand that these feelings are normal responses to your diagnosis. Ignoring them will not make them go away. Allow yourself to feel what is inside you. It is okay to cry if you feel like it.
Anger, fear, and sadness are emotions that most people with serious chronic illnesses experience. You may be scared that you will become sick or will not see the children in your life grow up. Or maybe you are afraid that you will not achieve your life goals. In the beginning, it may seem that testing positive is a death sentence, but this is definitely not true. There is life after a positive test. In fact, many people living with HIV (HIV+) lead full and healthy lives.
You may also feel that you are now damaged in some way and that no one will love you because you are living with HIV. Or you may blame yourself for getting HIV and ask yourself, "How could I have let this happen to me?" Try to be gentle with yourself. Guilt and shame can be destructive. If possible, try to have some compassion for yourself and forgive yourself if necessary. You have just gotten bad news and face changes and challenges ahead. If forgiving yourself or being compassionate with yourself seems difficult, try to imagine how you would respond to a loved one whom you just learned was living with HIV. Think on the love and comfort you might give that person and share some with yourself. You are just as deserving and just as capable of giving and receiving love as ever.
Being diagnosed with HIV presents many challenges. Building a support network can help you learn to cope. Take your time and do not feel that you have to tell everyone right away. It is important not to let fear of being judged cause you to isolate yourself and not talk to anyone. If it is hard to tell family and friends at first, you may want to turn to HIV organizations. For more information, see The Well Project's fact sheets on Disclosure and Getting Connected.
Many newly diagnosed people want to speak with others in the same situation. This can ease isolation and help overcome stigma. There are many AIDS service organizations (ASOs) that offer support and information to people living with HIV. ASOs are great places to find helpful, non-judgmental people to talk with, and many offer support groups. Joining a support group and talking about your feelings in a safe space may reduce fears and concerns. There are support groups offered by ASOs in many parts of the US. Click here to find an ASO in the US. To find services across the world, visit AIDSmap’s e-atlas.
Finding networks or others who are in similar situations might also help you not feel so alone. Be sure to check out The Well Project’s blog, “A Girl Like Me” for first-hand accounts of women living with HIV from different parts of the world and how they each have dealt with their HIV diagnosis.
As upsetting as testing positive can be, you are better off knowing. Once you know that you are living with HIV, you can take charge of your health and have the best chance to slow or prevent disease progression. Getting informed about HIV and its treatment will help you make the best of your situation. The latest national and international guidelines recommend that all people diagnosed with HIV start treatment right away.
An important factor in getting good care and treatment is to find the right health care provider. Look for a health care provider who specializes in treating HIV. Studies have shown that a person living with HIV whose health care provider treats many people living with HIV lives longer than a person whose health care provider treats a few people living with HIV.
Even though there is no cure for HIV disease, there are many treatments that help keep HIV under control. There are now over 30 HIV drugs available. Much has been learned about how to use these drugs more easily and effectively, and with fewer side effects. The use of HIV drugs is allowing many to live long and healthy lives.
It is important that you get information and work with your health care provider to decide what treatments are best for you. There are many good places to get information including ASOs, hotlines, and websites. But be careful about the information you are getting. Check it out with your health care provider or other reliable sources to make sure it is accurate. Remember, there are no "miracle" cures. If it sounds too good to be true, it is probably not true.
Learning that you are living with HIV may make you feel you have lost control over your life. Try not to let this rush you into making decisions when you are still coming to terms with your diagnosis. Remember, you are in charge of your own health care. You can decide which treatments you use and when to use them. Take your time and learn about your options. Unless you are very ill and need to make treatment decisions quickly, you have time to think things through. For more information, see our fact sheet on Considerations Before Starting HIV Treatment.
You are not alone. Globally, women make up half of all people living with HIV - that's over 17 million women living with HIV. In the US, over one million people are living with HIV, and approximately one in four people newly diagnosed with HIV are women. There are many women living with HIV who can provide information, support, and advice.
Keeping to yourself can make the process of moving forward after the diagnosis more difficult. It is a good idea to reach out to people, but if anyone threatens you with violence or is abusive, it is time to step away from them. Take yourself and any children you have to a safe place and talk with someone you trust. You need a positive environment and supportive people in your life. For more information, see our fact sheet on Violence Against Women and HIV.
Also be careful not to put your family's welfare ahead of your own. When you take care of yourself, you are doing something good for yourself and your family. You owe it to them to make sure you are as healthy as you can be. For more information, see our fact sheet on Women and HIV.
Being diagnosed with HIV is life changing; however, it does not change the essence of who you are. HIV is a virus. Learn to see yourself as a person living with HIV, not a victim. You can do this by getting informed, taking charge of your health care, and learning how to manage HIV. There are many resources to help you on this new path (see the resource section below).
You may find that some of the priorities in your life now change. This can be a good thing. Facing a serious illness can prompt people to make their lives better. Many people living with HIV make favorable changes such as breaking bad habits like drinking too much or smoking. As serious as this chronic condition can be, there is good reason to have hope that your life will be full and healthy. Do not give up on yourself or your dreams.
Quick links to related fact sheets or resources by The Well Project for those seeking information on HIV or HIV Treatment: