- Be a person living with HIV - not one dying of it.
- Commit yourself to doing everything you can to keep the virus in check.
- Look for a doctor who is a specialist with a large HIV practice who is connected with a quality hospital. Learn how to maximize your time with doctors.
- HIV. Basics
- If lab or other tests are unexpectedly bad or good, ask for them to be done again - preferably by a different lab.
- Decide whether to start treatment. If so, choose a treatment that fits your life.
- Once you choose a treatment, follow the prescribed regimen. Learn to be wise about purchasing, living with, storing and disposing of drugs. Free drugs may be available.
- Non-Western treatments should be complementary, not instead of Western treatments. If needed, cutting edge treatments are available through clinical trials.
- Decide who to tell about your HIV status, and when.
- Tell every doctor and other medical professional about your HIV status and drugs.
- Think of family and friends as part of your health care team. Ask for help when you need it. Family roles may change as your needs change.
- Share your emotions. Seek someone who is going through the same thing you are. Consider joining a support group.
- Examine your insurance and financial situation to determine how to pay for medical care and drugs or access them for free if you don't have the resources. If you don't have health insurance, do what you can to get it. You still can.
- Pay attention to your financial basics. Start improving your financial resources. Do what you can to get rid of or minimize existing debt. Refine your investment strategy. Keep track of medical expenses.
- When debt is under control, start working on your goals.
- If you work: Learn how to navigate the potential mine field.
- If you are not able to work, learn the best way to apply for disability income benefits. If you receive a disability benefit, learn how to keep it.
- If you are returning to work or changing jobs, a new employer cannot ask about your health condition.
- Self employed and business owners
- Be sure your legal affairs are in order, including Advance Care Directives. HIV only makes this need more urgent. It will help you feel in control.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Live a healthy lifestyle. It helps make drugs and other treatments most effective.
- If you have a pet, learn how to live with it safely. If you don't have a pet, consider getting one. A pet is good for your health.
- Although a major source of transmission of HIV is through bodily contact, you can still be physically intimate with people. Learn how to avoid transmitting HIV to other people.
- Watch for depression. Depression, and all other side effects, can be treated.
- Learn About Other Diseases That Can Show Up When Living With HIV, How To Help Prevent Them And Symptoms To Watch For.
Living With HIV
Living with HIV can be exhausting. There may be multiple drugs that have to be taken every day, often on a complicated schedule. Unpleasant side effects can show up at the most inconvenient times. There are time consuming visits to one doctor or another. Tests. Fatigue. Safe sex. The occasional (or not so occasional) seemingly unrelated health problem. Constant planning. Etc. etc. etc.
At the same time, HIV often brings a new perspective on life -- a wake up call - a reaffirmation of the will to live, an understanding of the preciousness and fragility of life, and the importance of people.
There are steps you can take to help keep HIV in check, to maximize your immune system, minimize HIV's long term effects, maximize your finances and work situation, and to seek fulfillment. Following are time tested techniques to consider. For additional information, click on the link.
- Commit yourself to doing everything you can to keep the virus in check. This mindset will help you find the best doctor and treatment for you, as well as to comply with treatment regimens.
- If you don't have one, look for a doctor with a large HIV practice who is connected with a good quality hospital - in a different locale if necessary. Learn how to maximize your time with doctors. You can switch doctors if necessary.
- Work with your HIV specialist to determine the best drug(s) for your health situation and lifestyle. Which treatment(s) to use will likely change over time. If you have any question about which treatment to take, get a second opinion.
- Learn what you need to know about HIV.
- If you haven't started treatment yet:
- Follow the suggestions of your HIV specialist about how often to get tests to determine if it is time to start treatment.
- If you have started treatment:
- Non-western treatments should be complementary, not instead of Western treatments.
- If standard treatments are not working for you, cutting edge treatments are available through clinical trials.
- If lab or other tests are unexpectedly bad or good, ask for them to be taken over again, preferably by a different lab.
- Tell every doctor or other medical person you see about your HIV status.
- Keep a List of Medicines with you at all times in case medical personnel need to know.
- Drugs do not work in a vacuum. Live a healthy lifestyle. It helps make drugs and other treatments more effective.
- Keep in mind that you do not have to live in pain or other side effects. Treatments are available.
- It is advisable to do what you can to make your home environment a healing environment.
- If you don't have one, consider getting a pet. It doesn't have to be a dog or a cat. Pets are proven to enhance quality of life and even to extend life.
Emotional and social needs
- Be a person living with HIV disease. Don't let HIV define you.
- Share your emotions.
- Make contact with another person who is going through a similar experience.
- Consider joining a support group and/or professional counseling.
- Watch for depression. Depression, and all other emotional side effects, can be treated.
- If you get stuck in a down period, talk with your doctor or a therapist.
- Don't allow any physical or emotional effects from HIV or your medications keep you from a social life or physical intimacy with your spouse or partner.
- Decide who to tell about your HIV status, and when. Your answers may be different for family and friends, children and work. If not before, tell your children if you have symptoms.
- If you haven't already, consider telling about your HIV status to family, friends, your employer and co-workers. Watch your underage children for lingering effects.
- If you have a pet, learn how to best live with it. safely If you don't have a pet, consider getting one. They are good for emotional and physical health.
- Think of family and friends as part of your health care team. Ask for help when you need it.
- Once symptoms appear, family roles likely shift as your needs change. It can take time to adjust to changes or work through a new one that works for all members.
- If you don't have health insurance, do everything you can to get it.
- If you have health insurance, do what you can to keep it.
- Learn how to maximize your health insurance including how to make appeals the best way.
- Pay attention to your financial basics. Dp what you can to start improving your financial resources - including getting rid of or minimizing existing debt.
- If you are in a financial crunch, create a plan to pay down debt as soon as you can while keeping a healthy lifestyle. Once you are out of debt, try to set up an Emergency+Fund to keep your lifestyle going durng any rough times. If you are over your head in debt, consider bankruptcy.
- When debt is under control, get back to working on your goals. Focus on what would make life fulfilling. Then do what you can to go for it. Financial planning helps.
- Reexamine your investment strategy to fit your current situation.
- Keep track of your medical expenses. They may be tax deductible.
- If you work:
- Learn about your legal rights and benefits and how to get them.
- Look for an advisor in the company.
- Prepare in case disability happens by taking such steps as increasing credit and life insurance.
- Keep track of job evaluations and good comments about your work.
- If your goals involve seeking work, changing jobs or even careers, your HIV status by itself is not a reason to keep you from making a change.
- If you are not able to work (disabled):
- If you haven't before, apply for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) in a manner most likely to receive a "yes."
- If you receive a disability income, learn what to do if your case is reviewed.
- Retraining is likely available if needed to help you reenter the workforce.
- Self employed people and business owners are advised to think about planning for continuation of your business in the event you become unable to work.
If you haven't already:
- Learn about safer sex and other means of transmitting the virus. If you knowingly transmit the virus, you may be liable for money damages and there may even be criminal penalties.
- Learn about the HIV resources in your community.
- Put your legal affairs in order. Everyone should at least have a will regardless of health condition.
- Talk with your family about what kind of medical care you would want or not want if you become unable to speak for yourself, and what kind of funeral you would want. Ask them to do the same. Consider signing a Health Care Power Of Attorney, Living Will or other Advance Directive.
- You can personalize the steps to your medical, insurance, economic, work, and social situation by getting a Personalized Survival Guide. If you don't feel able to take these steps yourself, ask a trusted friend or family member to help.
- If you believe you are at or approaching the end of your life, see: End of Life.