Living with HIV is serious, but you can absolutely take steps to keep yourself living a long and healthy life. If you have already been diagnosed with HIV and are looking to have someone guide you through this process or if you are looking to return to treatment, please visit the Case Management page.
Letter to Newly
Finding out that you are living with HIV or have AIDS is an overwhelming experience than can cause you to feel afraid, confused, and angry. Having these feelings and moving through acceptance is a normal part of learning to live with HIV/AIDS. However,over time many newly infected people learn ways to help them deal with their HIV/AIDS.
If you are newly diagnosed and want to learn how to live well with HIV/AIDS, it is important to empower yourself by understanding as much as you can about HIV/AIDS, and to make lifestyle changes than can help you improve your long-term health.
This page can help you empower yourself to deal with HIV/AIDS and take control of how you feel and live. There are many local agencies that can assist you with medical appointments, support groups, and other services that you may need. When reading about HIV/AIDS, you will find that you are definitely not alone. Please always feel free to call the Ohio HIV/STD Hotline for referrals and support.
You are the same person that you were before you got your diagnosis. Yes, this may be the most shocking thing to ever happen to you. But human beings are resilient, adaptive creatures. Once you make it through this period, you will do what many have done before you – adjust and continue with you life. Just take it step by step…
- Stop and Breathe. Close your eyes and take a deep breath in through your nose and out through your mouth. Focus on your breathing and allow your mind to clear. Remember how good this feels and use this technique when you feel overwhelmed.
- Focus on the present. Right now, your imagination is your worst enemy. Your mind is probably thinking about the future and the bad things that could occur. Be focused on the present, because that’s the time you have. Nobody can change the past or control the future. The only time you can do anything about is right now. What you do in the present can help shape your future.
- Forgive Yourself. Stop blaming yourself for what happened. Stop blaming who might have given you HIV/AIDS. Blame usually leads to anger, and anger can lead to violence and hate toward yourself and others. Forgiving yourself allows your healing to start and it also allows you to forgive others in time.
- Anger and Revenge. Feelings of anger and revenge toward who might have given you HIV/AIDS may lead to violence and hate. Acknowledge these feelings, then let them go. Do not act on these feelings, but do discuss them with others who have experienced what you are experiencing. Talk with a counselor, social worker, or case manager. Learn to forgive!
- Make your own experience. Everyone’s life is a unique experience, unique set of events, and unique outcomes. Don’t get caught up in what has happened to other people with HIV/AIDS. Your experience is what you make it. What happens in your future is unique to you; it is shaped by what you do in the present.
- Use your support networks. Support networks are people in your life who are on your side when you need them, helping you with no judgement, no lectures, and no hesitation. Support networks take on different forms for each person. Yours may be family members, close friends, or a mixture of both.
- See a Doctor. It is recommended that you see an HIV specialist or a doctor who has experience treating HIV patients. You have a choice of what doctor you see for your medical care. Make your decision based on their knowledge of HIV and your comfort level with your specialist. Many people with HIV/AIDS see an Infectious Disease doctor or Special Immunology doctor. Specialists are likely to know about the latest treatments for HIV/AIDS. Don’t let pride or embarrassment stop you from telling a doctor about your condition. Your long term health is important.
- Manage Information Overload. People commonly have two extreme reactions after being diagnosed. They either completely avoid any mention of HIV/AIDS or the seek out, read, and absorb as much information as they can about the topic. Aim for information flow control. That means figuring out how much information about HIV/AIDS is enough for you at a particular time. It is up to you to set your own limits on what you can handle.
It is important that you get the medical and social services that you need to maintain a healthy lifestyle. Take charge of your healthcare by honestly telling medical care and social service professionals what you need.
Tips for getting the services you need:
- Always get a contact person’s name and phone number.
- Ask questions if you don’t understand.
- Keep a copy of everything
Know your rights:
- The Americans with Disability Act protects people with HIV from discrimination (www.ada.gov).
- In Ohio, no one can tell your HIV/AIDS status to anyone else without your written permission.
- Ask your local AIDS service organization about these and other laws.
“Disclosure” means telling someone you have HIV. Who to tell about your HIV status and how to tell them is a complex and personal decision. While disclosure is never easy, it may help to plan ahead so that you are able to disclose under the best possible conditions.
- Tell people you have had sexual contact with.
- Tell people you have shared needles with.
- Tell your doctors and other healthcare providers to ensure you receive appropriate care.
You do not need to tell your family, friends, or the general public that you are HIV-positive. However, many people feel those closest to them provide both emotional and practical support.
You do not have to tell your employer. If you do, remember that as long as you are performing your job, your employer cannot legally discriminate against you.
People living with HIV are protected under the Americans with Disabilities Act (www.ada.gov).
In most cases, sharing your HIV status is a personal choice. But in the case of sexual relationships, it is a legal requirement. Ohio law often referred to as “House Bill 100” required that you disclose your HIV-positive status before knowingly exposing or transmitting HIV to someone else. It is a second-degree felony to have sexual contact (oral, vaginal, or anal sex) with someone without telling them you are HIV-positive. Even if you do not happen to transmit HIV to your partner during sexual activity, you could still be prosecuted.
There is no one best way to tell someone. It will help to ask yourself a few questions before disclosing.
- Who do I want to tell and why do I want them to know?
- How much am I ready to share or are they ready to hear?
- How will disclosing my HIV status affect me and how will it affect the people around me?
Consider where you want the disclosure to take place. It could be at home, at a friend’s house, or in a healthcare setting so that support is readily available. Although there is generally no one right time, you should tell when you feel ready or when you are legally required to do so. For example, if you are going to be involved in an activity where HIV could be transmitted.
Disclosing your HIV status can be stressful. While you may receive love and support from some of the people you tell, others may not be as accepting. Try to find someone that can support you through this difficult time. If you have not told any family yet, turn to your doctor, social worker, counselor, or community AIDS organization to do so.
Disclosing your HIV status will also have an affect on the person or people you are telling. People will react differently to the news. Your friends and family may immediately accept your diagnosis. Others may react negatively and need some time to process what you have told them and to overcome fears and preconceived notions they have about HIV.
Just like you, people you tell will need support too: try to leave them brochures or information about HIV that they can look at later. Give them telephone numbers of support groups in the area. Also, let them know who else is aware of your status, so that they can support each other.
If children are part of your life, it is important to ask yourself why you want to tell them:
- Will they be angry if you keep a secret?
- Do they suspect something?
- Do you look or feel sick?
Children can react to the news of HIV in many different ways. Older kids may be upset that you kept a secret from them. Younger children may not show emotion because they are just too young to understand. You may decide only to tell them as much as you consider appropriate for their age.
Don’t forget that kids need support too. Give them the name of another adult they can talk to, like an aunt or grandparent. Several books and organizations, like Camp Sunrise are available to help guide HIV families and their children.
You can stay healthy or even improve your health by keeping your immune system strong. A strong immune system helps fight infections and gives you more energy. To best support your immune system, you may need to make some healthy changes to your lifestyle. Changing a habit is hard, but the benefits can make your life much less stressful.
A healthy diet gives you the important nutrition you need to maintain weight and prevent other health issues. Eating fruits, vegetables, proteins, and grains along with drinking at least 8 glasses of water daily allows your immune system to properly function. For a guide on proper nutrition, please visit www.choosemyplate.gov.
Often, many people living with HIV/AIDS experience difficulty eating at some point. Contact your doctor if you experience any of the following:
- Loss of appetite
- Sore mouth and throat
- Reduced taste
If you haven’t been exercising regularly, this is the time to start. Ease yourself into a new routine by first starting to take a 20-minute walk 3 days a week. Build up the duration and frequency of your workouts to 45 minutes to an hour of exercise 4 or 5 days per week.
Do a combination of exercises for strength (such as lifting weights or doing push ups), flexibility (such as yoga), and endurance (such as jogging). And of course, talk with your doctor prior to starting any new exercise plan.
For more information about staying fit, please visit www.fitness.gov.
Pregnancy and HIV/AIDS
If you’re pregnant or thinking about getting pregnant, it is important to ask your doctor for more information and for what to expect. Many women with HIV/AIDS are living healthy lives and have had healthy children. However, women without proper medical attention have had children who have become sick or have died. Make sure to visit Women’s Health – Pregnancy and HIV/AIDS.
This page was adapted from the Ohio Department of Health’s “STEPS: living positive, being healthy” handbook that may be ordered through the ODH Clearinghouse Order Form 2016.