You are here: Home General Living With HIV Summary
Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary

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.

Medical Care

Emotional and social needs

Health Insurance

Finances

Work

If you haven't already:

NOTE:

  • 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.

Be a person living with HIV - not one dying of it.

You are not your disease.

It is a mental attitude whether to live with HIV and any other health condition you have, or to be consumed by your diagnosis and miss life.

It is best to live life until you can’t.

You are here today. The phrase, "Take one day at a time," has practically become a cliché because it works.

For more information, see:

Commit yourself to doing everything you can to keep the virus in check.

Decide who will be in charge of making medical decisions – you or your doctor(s) or someone else. Keep in mind that there is growing evidence that patients who participate in decisions about their health care do better.

Start working on your mental attitude.

  • Expect the best
  • Do your best to keep a positive attitude. 
  • Be active about your health condition. Start thinking of yourself as a medical consumer instead of as a “patient.”

Studies show that people who take control do better than those who don’t. Still, the choice is yours.

Don’t beat yourself up if you have days when you can’t do anything. When fear threatens to take over, use it as a trigger to take a moment and center yourself to the here and now.

For more information, see:

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.

Choosing an HIV doctor

Even if you do not need treatment at this point, find the best doctor available to you who has experience treating people with HIV. In many instances, treating HIV is more of an art than a science.

The more people with HIV the doctor sees on a regular basis, the more likely he or she is to be on top of the latest treatments, and to have an instinctive awareness of what is going on in patients with HIV. If no such doctor is available locally, consider traveling to a city where such doctors are available. You can then do your treatment at home and be monitored by your local medical practitioner.

We also suggest that you find a doctor you feel comfortable with – including discussing sensitive subjects. For instance, you need to be honest with your HIV doctor about your sexual practices, drug use, and adherence to any agreed to drug regimen. Since there is currently no cure for HIV, assume you will be seeing your HIV doctor for a long time.

As you will see from our tool to help you choose a doctor, we leave it up to you to determine what else you think is important in a doctor. Keep in mind that your doctor will be your partner in your health care.

We recommend that you consider the hospital with which your doctor is connected because you may need hospitalization down the line. If so, you want a hospital that is high quality and used to treating people with HIV.

One way to find a doctor who specializes in HIV is to type in your zip code in: www.hivtreatmentispower.com offsite link

NOTE: If your HIV doctor is a specialist in internal medicine (basically a family practice), he or she can also be your primary care physician. If your HIV doctor is not your primary care physician, be sure he or she keeps your primary doctor to date after each visit.

Maximizing your time with a doctor

Start preparing to maximize your limited time with your doctors by taking the following steps. Taking these steps will also help you feel in control.

  • Buy a tape or digital recorder so you can record your sessions and replay them later.
  • Locate a person to go with you to important doctor visits to help ask questions and listen. Sometimes emotions can make it difficult to absorb everything that is said.
  • Buy a fax machine or other inexpensive mechanism which allows you to receive and send lab and medical reports.
  • Start keeping a symptoms diary.
  • Create a list of medications and keep it up to date. (Survivorship A to Z provides an easy chart that allows you to store your list and print it whenever you need it.)

Other diseases

Research indicates that people with HIV have a greater risk of getting other diseases such as  lung cancer, heart attacks, and strokes. It is helpful to remind your HIV doctor to keep a focus on the whole person, not just suppressing the virus. Doctors can misdiagnose a situation by narrowing their focus to HIV and not noticing that symptoms can point to another health situation.

Smoothing bumps in the road

If your relationship with your doctor gets out of sync, there are steps to take to help smooth the bumps. For instance, meet with your doctor and let him know what you are unhappy about. Offer solutions if possible.

Switching doctors

If it isn’t working out with your doctor, switch to another one. We don’t suggest that you change doctors lightly. However, as things stand now, you will be working with your HIV specialist for a long time.

For more information, see:

HIV. Basics

Human Immuno-deficiency Virus (HIV) is the virus that causes AIDS.  Thanks to medical breakthroughs, HIV is basically a treatable chronic condition.

HIV attacks your immune system. Immune systems are made up of cells that fight infection and disease. One of the most important of these cells that fights infection is called the CD4 cell. It is also called the "T-helper cell" or T-cell.

  • Once HIV is in the body, it infects CD4 (T-cell) cells and makes copies of itself in these cells. This makes new viruses. These new viruses are let out into the blood and infect other CD4 (T-cell) cells. This process kills the CD4 (T-cell) cells and the CD4 (T-cell) count goes down.
  • As CD4 (T-cell) cells are lost, the immune system becomes weak. This makes it harder for your body to fight certain conditions that do not affect most healthy people. These include opportunistic infections (OIs) such as pneumonia, herpes, tuberculosis, and cancers such as lymphoma and cervical cancer.

Currently there is no known cure for HIV. However, there is a variety of drugs which can usually keep HIV in check.
 
If left untreated, HIV disease is usually fatal. Once HIV enters the blood stream, it lives in a person's cells. If HIV disease progresses to a certain point, it is known as AIDS. For example, if immune system T cells go below 200 as a result of the HIV infection or the person gets an illness generally associated with AIDS such as Kaposi Sarcoma. 

For the stages of HIV disease, see: http://www.sfaf.org/aids101/hiv_disease.html offsite link

For information on how HIV damages the immune system, see: http://www.sfaf.org/aids101/virology.html offsite link

If you do medical research about HIV/AIDS and read grim facts, keep in mind that: 

  • Statistical information about HIV disease is most likely out of date thanks to ongoing medical advances, including what are known as salvage therapies (therapies to use when first line therapies don't work). 
  • By their nature, statistics only provide a general guide so you can prepare in case the "what ifs" occur. Statistics do not predict what will happen to any individual. .
  • Doing medical research can provoke anxiety and possibly even depression.

Expect to hear lots of advice and stories from friends. Keep in mind that information about what happened to other people is "anecdotal." It is not scientific. What happens to other people is frequently irrelevant to your own experience.

For more information, see:

If lab or other tests are unexpectedly bad or good, ask for them to be done again - preferably by a different lab.

False results are rare, but not uncommon. It is likely your insurance will cover additional tests. If the insurance company won't pay, it is still worth getting the test. HIV and other blood tests are not that expensive.

We recommend using a different lab for the retest in case there is some problem at the first lab.

To learn more, see:

Decide whether to start treatment. If so, choose a treatment that fits your life.

The decision whether to start treatment

Just because you are HIV positive, does not automatically mean you should start treatment. Discuss whether to start treatment with your HIV specialist.

If you don't start treatment now, follow the suggestions of your HIV specialist about how often to get tests to determine if it is time to start treatment.

The Department of Health and Human Services recommends treatment (antiretroviral therapy) should be started for the following patients:

  • Treatment (antiretroviral therapy) should be started for patients with a history of an AIDS-defining illness or who have a count of less than 350 CD4 T cells. (There are circumstances where it recommends treatment for people with more than 350 CD4 T cells).
  • Pregnant women.
  • People with HIV-associated nephropathy.
  • Patients co-infected with HBV when treatment is indicated.

To learn more about the DHHS recommendations, see: http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf offsite link.

What treatment to take

A variety of drugs are used to treat HIV disease.

These days, there is generally more than one drug that can fit a particular situation. Look for a drug that not only works to contain or kill HIV, but also fits your lifestyle. For instance, consider the number of times the drug has to be taken a day and in what circumstances.

If you have a question about which drug(s) to take after consulting with your HIV specialist, get a second opinion from another HIV specialist who is not related to the first doctor.

Keep in mind that decisions about what drugs to use vary from time to time based on your reaction to current treatment and medical advances.

To help decide which is the best drug for you and your lifestyle, we have a tool: Choosing A Treatment

Think about so called "alternative" therapies such as massage and aromatherapy as complementary to Western style medicine instead of "either/or."

NOTE: Be sure to tell your doctor about every other prescription and over-the-counter drugs you take. Some may have a negative interaction with certain HIV drugs. To help keep track of your drugs, we provide a List Of Medications you can complete, print and carry with you.

To learn more, see:

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.

Before agreeing to take any drug, consider the pros and cons, as well as the alternatives. Keep in mind that all drugs have risks.  The longer a drug has been on the market, the more that is known about its effect (both good and bad).

Even if you have health insurance, it is in your interest to purchase drugs for the least price. Also consider other factors such as convenience and what happens if you need an emergency supply.

Drugs which are prescribed for purposes other than those which have been approved by the FDA are known as being used for "off label" use. If an insurer refuses to pay, appeal with your doctor's help.

Take each drug as directed, when you are supposed to, and for as long as you are supposed to. To repeat: Keep to your agreed regimen every day.

You can keep track of your lab test results on a tool at AidsMeds.com. See:http://cllsociety.org/toolbox/keeping-track-of-lab-results/  offsite link

If it becomes difficult to take a pill, there are tips to make it easier. For example, if you have trouble swallowing, take the pill with a carbonated drink.

Sometimes taking a pill can remind you of your HIV status. If you don't want to be reminded of your status, you may not take a pill. It may help to think of every pill you take as an affirmation of your desire to be healthy and to live.

Find out what to do if you miss a dose.

If you travel across time zones, ask your doctor what to do about when to take your medications.

Let your doctor know if you miss doses.

Don't take time off your drugs (known as a "drug holiday") without first consulting with your doctor.

For drugs that you take on a long term basis, talk to your doctor about finding out if a lesser dose will accomplish the purpose.

Learn how to safely store drugs, and to dispose of unused drugs.

For additional information, see:

Non-Western treatments should be complementary, not instead of Western treatments. If needed, cutting edge treatments are available through clinical trials.

Complementary and alternative drugs and treatments (CAM) such as yoga, massage and aromatherapy are a group of medical and health care systems, practices and products that are not presently considered to be a part of conventional medicine.

CAM may be used to try to slow disease progression or eliminate the disease altogether, for symptom management, pain relief, or stimulation of the immune system. CAM treatments usually include affectionate care, and often have a spiritual reinforcement.

It is generally recommended if a CAM drug or treatment is to be used, use the CAM drug or treatment in addition to, rather than instead of, western scientific based medicine. This combination is known as "integrative medicine."

For information about complementary treatments, including how to choose a treatment and a person to administer it, click here.

Decide who to tell about your HIV status, and when.

Whether to tell people about your HIV status, when to tell them, and what to tell, depends on the situation and why you are thinking of disclosing the information. The decision is a purely personal one. There is no right and wrong unless you could infect another person.

In general, there are four situations which give rise to this question. What you decide to do may vary in each situation.  The three situations are:

  • Family, Friends and Acquaintances
  • Children
  • The non-medical professionals in your life such as your lawyer
  • Work

In each situation, consider:

  • The pros and cons of telling.
  • Preparing before you tell.

There are three givens:

  • Keeping a secret is stressful. The greater the secret, the greater the stress.
  • There is no going back once you tell. As they say: "The cat's out of the bag."
  • Tell your sex partners and other people when there is a risk of transmitting HIV.

If you have children

  • Consider telling them about your diagnosis. If you have symptoms they are likely to notice, they will know something is wrong. If you don’t tell them what is happening, children frequently assume it is something they did wrong.
  • Tell each child in a manner that is appropriate for his or her age. Children will know something is happening and will likely assume it is their fault if they are not told.
  • Once you tell a child, watch for aftereffects. They may not show up for awhile.
  • If you need help either telling your children or dealing with their reactions, seek professional help. Also speak with your local disease specific nonprofit organization. They may have tips for you, or can point you to support groups where you may gain necessary information.

For more information, see:

Tell every doctor and other medical professional about your HIV status and drugs.

Health professionals need to know about your HIV status to help save time with diagnosis and to avoid prescribing treatments that can harm you. Knowledge also helps them take steps to avoid becoming infected with HIV.

Doctors also need to know what drugs you take to be sure that any newly prescribed drugs don’t create a harmful interaction or blunt the effectiveness of either drug. The easiest way to accomplish this is to always carry with you an up-to-date list of your medications. To make your life easier, Survivorship A to Z provides a list you can use.

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.

Your team

Think about the appropriate people around you as part of your team, just as doctors and other professionals are part of your team. Each member can provide his or her knowledge, advice, and support. 

Who is actually involved with you and your health care, and to what degree, is up to you. You don't have to accept help just because it is offered.

Likewise, you can set limits on peoples' participation in your experience. For example, only spend time with people who have a positive outlook and are supportive.

Expect that people will let you know when they hear stories about other people with HIV or about various treatments. This information can be overwhelming and not helpful. Feel free to let people know what you do or do not want them to pass on to you. Check any information you learn with your doctor.

Ask for the help you need

Don't wait to ask for help until the burden gets too great or you reach a breaking point. You don't need to be Superman or Wonder Woman and try to deal with everything you did before as well as everything that comes along with a diagnosis.

There may be times when you will need help either doing everyday tasks such as grocery shopping or child care, or matters directly related to your health such as bathing, accompanying you to doctor appointments, or acting as a patient advocate if you enter a hospital.

Make a list of your chores and responsibilities that you can't handle right now. Divide them up among your team.

If you have many needs, consider appointing a family member or friend to coordinate your support team for you. It takes away the burden. It is also helpful to team members because they can more easily say "no" when they need to.

If you need Medicaid (Medi-cal in California) and have too many assets, consider entering into a caregiver contract with a family member or friend. Such a contract is a legal way of reducing your assets. We have an article concerning Caregiver Contracts.  (We also have an article about how to qualify for Medicaid).

Ask someone to go with you to important meetings with your doctor

It is helpful to have a family member or friend attend all important meetings with doctors. Such a person can help in a batch of ways, including to help ask questions, help recall what was said, and to help relieve anxiety.  We refer to such a person as a Patient Advocate.

We also recommend that you take a digital or tape recorder to every session. You will learn about similar tips in our content about maximizing your time with a doctor

Think about their needs as well as your own.

A diagnosis affects everyone around you. Your needs come first, but theirs should not be ignored.

Just as you need to share your emotions, they should share theirs with one another and with you. Talking keeps mole hill size difficulties from erupting in to mountain size problems.

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.

Relax family rules to fit the situation

For example, meals could be eaten on paper plates with throw away plastic utensils when you are not feeling well. Chores that don't need to be done right away can be postponed.

Non-medical professionals in your life

Tell your insurance broker, lawyer, accountant and other non-medical professionals in your life about your diagnosis. They may have suggestions about how it affects specific situations you face and how to best deal with them.

Share your emotions. Seek someone who is going through the same thing you are. Consider joining a support group.

Let the people closest to you know when you are experiencing stress and fear. Talking helps. Your emotions may be all over the place due to the stress of dealing with the issues at hand as well as the unknown. 

Do what you can to relieve the stress. For example:

  • Define your fears. If you define your fears specifically, you can come up with solutions to each of them. You won't feel so powerless and overwhelmed by them.
  • When in a period of high stress, it is okay to eat foods that you consider to be comfort food, even if they are not the healthiest.
  • Start doing things to make you feel in control or that help you feel centered. For instance, think of a small project you can start and finish quickly.

Waiting for test results can be agonizing. There are time tested ideas that can help you get through this period. For instance:

  • Keep busy.
  • Take advantage of your support systems.
  • If you need help sleeping, get it.
  • Use relaxation techniques.
  • Exercise.

Seek out someone who is going through the same thing you are. No one understands what you are going through as much as a person in a similar situation. If you don’t know anyone, you may find a connection through your HIV specialist, friends, a local AIDS Service Organization, or the internet.

Consider joining a support group for the practical information as well as support.

For information, see:

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.

If you have health insurance

  • Do whatever is necessary to keep it. Health insurance is vitally important.
  • Learn what your health insurance does and does not cover, whether you are restricted to a group of doctors or hospitals or have a broader choice, and what needs prior approval, if anything.
  • Learn how to maximize use of your health insurance.
  • If you don't get what you want from your insurer:
    • Look for a source of influence that can help. For example, the person in HR who negotiated the company's contract, or a caring case manager at the insurer.
    • If that doesn't work: appeal - and appeal again. Be persistent.
    • If appeals don't work, think about pressure you can apply on the insurer - such as through the state Insurance Commission or through the press. (We tell you how to frame your story to get press attention in the document listed in "To Learn More.")

If you don't have health insurance

  • Do what you can to try to get it.
  • There are still ways to access health care. Keep in mind that all medical bills are negotiable. 
  • If you have too many assets or income to qualify for Medicaid (Medi-cal in California), it may still be possible to qualify.
  • Consider traveling outside the U.S. for good quality care at a lower price. This is known as "Medical Tourism."

NOTE:

  • Experience indicates that people who take the attitude "I'm going to die, so I'm going to blow through all my money now," generally live to regret it. Even with the most dire diagnosis, someone survives.
  • If finances of any type are an issue, Survivorship A to Z provides financial planning information that will help you maximize your resources. We also have tips for dealing with a financial crunch. 

For information see: 

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.

Whether you pay your rent, mortgage and credit cards on time affects your credit rating. In turn, your credit rating will determine how much money you can borrow and at what price if you need money. You may need money to pay for your medical expenses or to keep your lifestyle. Credit rating also impacts areas of life such as automobile insurance premiums.

  • Do what you can to protect and improve it.
  • Pay your basics on time, especially essential ones such as rent or mortgage payments.
    • Pay at least the minimums due on your credit cards on time. Timely payments are important to your credit.
    • Do not let any type of insurance policy lapse for non-payment. The last thing you need is a large economic loss that could have been insured against.
  • Pay attention to unpaid bills. There are guidelines for figuring out how to pay which creditor. You can negotiate most bills.

If debt is overwhelming, consider bankruptcy. Postponing bankruptcy only postpones the inevitable, burdens you with unnecessary stress and costs more by what could be called throwing good money after bad.

As soon as you are out of debt, do what you can to create an Emergency+Fund so you have cash on hand for emergencies and other expenses that may require cash.

Do what you can to improve your credit score. Credit scores are important for a batch of reasons, including how much you will be charged to borrow money.

Do what you can to Increase your credit. Start accepting the credit card offers you get in the mail. That doesn't mean to use the cards to run up debt. It does mean using each card enough to keep it open in case you need credit in the future. If you don't have credit, start getting it. .

  • Revisit your investment strategy to take into account the possibility of a shorter than normal life expectancy. That is not to say that HIV as such shortens your expectancy. Just that if it does, take that into account. Our documents on the subject show you how.
  • See what you can do to improve your income. Perhaps there is a better paying job with your employer for which you can qualify. Alternatively, consider changing jobs or even careers. (You can't be discriminated against because of your HIV if you want to attend school).
  • A little financial planning will help maximize your financial situation. It doesn't have to take a lot of time. Planning should take into account ongoing medical costs and changes in your income and non-medical expenses due to HIV and related health conditions. Planning should also include the possibility of a recurrence. If this becomes burdensome, ask a family member or friend to help. Professional help is also available.
  • Consider increasing the amount of life insurance you have. Among other ways to get life insurance, you may be able to do this at work once a year no matter what your health history. If you become sick, it can be used as an asset from which you can get cash.
  • See if you can obtain Disability Income Insurance. If you can't obtain it on your own, you may be able to get it from a new employer. Large employers such as the government often offer such insurance as an employee benefit.
  • Keep track of medical expenses. Include the cost of getting to and from doctors. Medical expenses may be deductible for tax purposes.
  • Don't pay a medical bill just because you receive it. Many health care providers send bills to patients even if the amount is covered by insurance. Check the bill to be sure:
    • That the service was received AND
    • That you owe it instead of the insurance company.
    • If you owe a bill, you can likely negotiate the amount due.

For additional information, see the above links which lead to "How to" information, and::

When debt is under control, start working on your goals.

Focus on what would make life fulfilling. Then do what you can to go for it. This may mean figuring out how to increase your income, or decrease your expenses, or both. (This is known as “financial planning”).

If your goals involve changing jobs or even careers, your HIV status by itself is not a reason to keep you from making a change.

For more information see:

If you work: Learn how to navigate the potential mine field.

Protections at work for people living with HIV are contained in laws such as the Americans With Disabilities Act. This means that among other protections, you cannot be discriminated against because of your HIV status.

It also means that if you tell your employer, the information is confidential. (There is no similar protection for what you tell co-workers).

You are also entitled to a reasonable accommodation if needed to help you do your work. Survivorship A to Z helps you determine what is reasonable, and how to negotiate for it.  NOTE: You are not entitled to an accommodation unless you tell your employer about your condition.

If the employer you work for is large enough, you may be entitled to time off work under the Family and Medical Leave Act.

Your employer likely provides benefits such as sick leave and vacation pay.

It helps to look for an advisor who can help you navigate through your work situation.

Keep track of job evaluations and good comments about your work in case you ever have a claim of discrimination due to your history of HIV.

Prepare in the event of disability by taking such steps as increasing credit and life insurance.

For additional information, see:

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 unable to work, you may be entitled to a benefit from your employer or from the government's programs: Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). Please do not apply for SSDI or SSI before reading our information about how to apply to provide the best chance of getting an approval. (Only 1/3rd of applicants for SSDI are approved).

If you receive a disability income, there are steps you can take to help assure it continues in the event your case is reviewed. For instance, every time you see your doctor, tell him or her how your HIV status or other health condition interferes with your ability to function. Be sure the symptoms are noted in your medical record.

Retraining to allow you to reenter the workforce is likely available. (This is known as "vocational rehabilitation.")

Before you reenter the workforce, consider volunteering.

For more information, see:

If you are returning to work or changing jobs, a new employer cannot ask about your health condition.

Employers can ask questions about your appearance, but not about your health. For instance, if you lost a leg to disease, an employer would be able to ask how you can do your job with one leg. He or she cannot ask how you lost your leg.

When writing your resume, there are some tips to consider. For instance, write your resume so that gaps due to illness are not readily apparent.

Think about when to tell about your health condition, if at all. For instance, consider telling after you have the job offer and before you start work so an employer doesn’t feel misled if you need medical care soon after starting the job, or an accommodation to help you do your job.

Consider volunteering before you start work. Retraining is available if needed.

For more information, see:

Self employed and business owners

Plan for continuation of your business in the event HIV or a related disease makes it too difficult to work.

While doing planning:

  • This is a good time to re-examine continuation planning in the event of a disaster.
  • Consider writing a business Ethical Will to pass on the your concept of the underpinning of the business and words of advice to continue it.

For information, see:

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.

Everyone should have a Will. Yes – everyone with or without HIV. Wills are not expensive. You can even write one yourself.

Everyone should consider executing documents known as Advance Care Directives (or Advance Directives). These documents describe what medical treatments you do or do not want if you become unable to speak for yourself. The two most important documents to consider are:

  • A Living Will which states what you do or do not want in a general manner.
  • A Health Care Power Of Attorney which appoints someone to make decisions for you in the gray areas not covered under a Living Will. It also gives that person power to enforce your health care wishes.

Ask other family members about their wishes. You’ll learn what they desire for themselves. Talking about this subject as a family also makes the discussion about proper planning instead of about HIV.

Once everyone states their view, make sure that people execute the appropriate documents. Follow the requirements of state law when writing and executing such documents.

While you are thinking about this subject, consider:

  • Writing an Ethical Will which passes on what you learned during your lifetime to the next generation.
  • Pre-planning your funeral arrangements. We are not suggesting that you pre-pay. Pre-planning can save a great deal of money and unnecessary stress at a very stressful time.

For information, see:

Learn about the HIV resources in your community.

Sources on the internet which provide lists of AIDS Service Organizations include:

Drugs do not work in a vacuum. Live a healthy lifestyle. It helps make drugs and other treatments most effective.

Proper food, exercise and rest can help get your body into its best fighting condition. They can also help prevent other diseases such as heart disease or diabetes.  

Dental health also counts. (Mounting evidence indicates that poor oral care can worsen serious medical problems).

Comfort foods are okay once in a while during periods of high stress. Otherwise, the goal is to eliminate unhealthy foods, or keep them to a bare minimum.

Keep in mind that having a pet of any kind can help with both emotional and physical health.

For information, see:

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.

Pets are good for emotional health and have been shown to increase longevity.

The pet doesn't have to be a dog or a cat, and it doesn't have to be an attention requiring puppy or kitten.

Learn how to live safely with your pet. For instance, if you have a cat, preferably ask someone to change the litter. If there is no one available, wear rubber gloves. Cat poop can be harmful to you because of your lowered immune system.

If you have a landlord who prohibits pets, you may be able to have one as an accommodation under the Americans With Disabilities Act. Survivorship A to Z provides advice about how to live with a pet including how not to get any kind of infection from them. Please see Americans With Disabilities Act.

NOTE: 

  • While pets can be an emotional balm, they are not a substitute for communicating with other people in a similar situation, support groups or therapists.
  • The "H" in HIV stands for human. HIV cannot be transmitted to or from a pet. This includes if a dog or cat causes you to bleed and licks the blood or the pet licks sweat form your body. 

For additional information, see: Pets 101

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.

You may not want to date or have sex with your spouse or significant other after learning you are HIV positive. However, physical intimacy is important to our well being.

You can have enjoyable sex in a manner that does not put your partner at risk, or which minimizes the risk. Rather than think in terms of black and white (safe/unsafe), think in terms of more or less risk. Our document on HIV transmission shows you how.

Be aware that knowingly transmitting HIV is so serious, that in some states the person who knowingly transmits HIV may be subjected to criminal penalties. There is always the risk of civil liability (money damages).

If you are in a couple, your becoming HIV positive may place major stress on the relationship. If the relationship becomes difficult, consider couples counseling at your local AIDS Service Organization (see: section above) and/or joining a support group with other couples.

For information see:

Watch for depression. Depression, and all other side effects, can be treated.

Learn the signs of depression such as being in a funk for an extended period of time or not being interested in activities you love.

Depression is generally treatable.

If you get stuck in a down mode:

  • Tell your HIV specialist or your primary care doctor. He or she may prescribe anti-depressant or anti-anxiety medications. 
  • Consider seeking professional counseling such as a Consultation-Liaison Psychiatrist (a psychiatrist who specializes in helping people with life changing conditions), a psychologist or a social worker. Counseling is for anyone who wants to sort out what they're feeling. Counseling is usually done in person. If that is not possible, you can arrange for therapy on the telephone, or even on line. If your insurance doesn't pay for counseling, many therapists work on a sliding scale and charge according to your means. 

Do what you can to relieve stress. For example, start doing things to make you feel in control or that help you feel centered. For instance, think of a small project you can start and finish quickly. During stressful periods, eat foods that are comfort food for you, even if they’re not the healthiest.

Side effects which can accompany HIV disease such as fatigue or neuropathy are also treatable. Speak with your doctor.

NOTE: You do not have to live in pain. People tend to think that if they have a health condition, they have to have pain. That is not the case. Speak with your doctor. 

For information, see the following:

Learn About Other Diseases That Can Show Up When Living With HIV, How To Help Prevent Them And Symptoms To Watch For.

Long term survivors are encountering additional diseases which are becoming associated with living with HIV. For instance, heart disease.

Speak with your HIV doctor about other diseases for which you may be at risk. Ask:

  • What you can do to help prevent additional diseases  for which you may be at risk.
  • Symptoms to watch for.

For example, an article in Science Daily indicates that men and women who are living with HIV are up to 90 times more likely than the general population to develop anal cancer. The American Academy of HIV Medicine, the Centers for Disease Control and the American Cancer Society recommend anal cancer screenings for HIV-positive patients.