Managing your health: a guide for people living with HIV
6. Your emotional health
There is a connection between the mind and body. While most people understand that living with HIV can be stressful, they don’t always realize that emotions can affect your body and your physical health, making it more difficult to fight off HIV. This chapter explores your emotional and mental health, its relationship with your physical health, and the importance of paying attention to your emotional health when you're living with HIV.
Self-esteem is a term that describes how good or bad we feel about ourselves. It is important because many emotional problems have their roots in poor self-esteem. After an HIV diagnosis, self-esteem can be affected if people with HIV continue to blame themselves or others for becoming infected. Even after many years of living with HIV, poor self-esteem can be reinforced by things like stigma (social disapproval) and discrimination, social isolation or visible changes in your appearance brought on by HIV. Poor self-esteem can make it difficult to live a healthy and happy life with HIV. Addressing emotional problems often starts with dealing with self-esteem.
As a person with HIV, experiencing stress is very common. We fear getting sick, worry about infecting others and fear that we will be discriminated against. Even if we try not to think about the fears, the worry can eat away at us and create chronic stress. Our bodies react with tension in our muscles, inability to relax and other physical symptoms. The more constant the stress is, the more it negatively affects our bodies. Some people cope with chronic stress well by seeking support, developing spiritual practices, learning to relax and trying not to worry too much about things they cannot control. Others react to stress poorly by worrying too much or by relying on practices that create more problems—like abusing alcohol and drugs or having unsafe sex. Many studies have shown that the more stress you experience and the more poorly you cope with it, the more it will affect your immune system negatively.
If you feel that you are not coping well with stress, there are lots of things you can do. You might consider talking to your doctor or a counsellor at your local AIDS service organization. If you take comfort in your spirituality, you might talk to somebody from your faith community. Sometimes just talking about the stress in our lives can be helpful and put things in perspective. You might volunteer with a local support group for people with HIV or a community program in meditation or yoga. Often taking time to be good to ourselves can reduce stress and promote a more positive outlook.
Some people react so poorly to stress that they develop anxiety conditions. These can include panic attacks; phobias (intense fears about specific things like needles, for example); somatization (experiencing physical symptoms that do not have a physical cause); or generalized anxiety disorder (a nervousness that interferes with everything you do). Anxiety conditions can be treated effectively with counselling, behavioural therapy or anti-anxiety drugs, but require professional diagnose and treatment.
Although everyone, with or without HIV, experiences short periods of feeling sad or down, some people develop states of sadness and helplessness they cannot shake. These are often accompanied by low energy, problems in sleeping, eating or concentrating, and even feelings of wanting to commit suicide. These feelings are known as depression. Depression is very common, with more than 40 per cent of people with HIV experiencing episodes of depression at one time or another. Like other emotional problems, depression limits your quality of life and interferes with your immune system’s ability to fight HIV. As well, depression can often undermine your ability to care for your health. It may lead to poor anti-HIV drug adherence, drug and alcohol abuse or unsafe sex.
The causes of depression may include your genetics and family history, past experiences of loss, social isolation without support of friends and family, or the consequences of prolonged recreational drug use. Depression may also be brought on by some medications like the anti-HIV drug efavirenz (Sustiva, and also found in the combination pill Atripla) or interferon treatment for hepatitis C. HIV disease itself can also be a factor in depression. Certain conditions related to advanced HIV disease such as anemia (low red blood cell count), severe fatigue and dementia can cause symptoms that feel very similar to depression.
Low energy and feeling helpless are key symptoms of depression that make it hard for people to seek help. However, depression is very treatable and, with the right therapy, you can feel much better. Effective treatment for depression can include individual and group counselling, cognitive behavioural therapy, which alters depressive thinking, and antidepressant drugs.
Drug and alcohol abuse
Some people with HIV use substances like recreational drugs and alcohol to help cope with poor self-esteem, stress, anxiety and depression. Sometimes this use can lead to addiction and becomes an emotional problem itself. This can happen very gradually: often people don’t realize that their social drinking or recreational drug use is getting out of hand. Substance abuse can directly harm the immune system. It can also interfere with your ability to stay healthy by contributing to poor anti-HIV drug adherence or poor sleep and nutrition.
If you or others identify your drug or alcohol use as a problem, there are many resources to help you get it under control. If you are not ready to reduce or abstain, another approach is harm reduction, which tries to lessen the potential harm associated with substance use. Harm reduction techniques like education, distribution of clean drug-use equipment and promotion of safe sex will help reduce transmission of HIV and hepatitis and other problems associated with drug and alcohol abuse (see Chapter 4, Healthy living).
Seeking emotional support
In dealing with any emotional problem, the first step is always admitting you need help. Next comes taking the steps to seek it. Especially after first learning that you are HIV-positive, it can be very easy to become isolated from friends, family and community. Experiences of stigma and discrimination can reinforce this further. Any of the emotional and mental health issues discussed above will be made worse by social isolation and can be helped by seeking support from others. It is helpful to have others to talk to, laugh with, cry with and count on for support and practical assistance.
Telling others you have HIV (disclosure)
It is important to decide whom you can tell about being HIV-positive. This is called disclosure. To help you decide whom you can tell, ask yourself the following questions:
- Whom do you feel needs to know?
- Who will not judge you?
- Whom can you feel safe with?
- Who is a good listener?
- Who will support you unconditionally?
- Who will respect your privacy and only tell others if you ask them to?
- Who is sensible, reliable and practical and might be able to help you if they knew?
For the most part, you don’t have to tell anybody until you’re ready, and you don’t have to tell everyone at once. You may choose to tell different people for different reasons. It may seem very hard at first, but will become easier the longer you live with HIV. The one exception is that you are obliged by law to disclose your HIV status to former, current and future sexual partners and people with whom you share drug equipment. Sharing this information can be very difficult, but there are counsellors at some HIV testing clinics or with Public Health who can help you plan how to do this, or even do it for you. For more information about disclosure and sexual partners, see Chapter 7, Your sexual health, and Chapter 21, Legal issues. For more information about disclosing to children, see Chapter 16, Children and HIV. Although you may experience rejection in telling friends, families, co-workers, sexual partners or people you have shared drug equipment with, often the reactions are not as bad as you fear. You are a good judge of whom you should tell about your HIV status, so trust your feelings. Disclosing to children presents special challenges. For more information about disclosing to children, see Chapter 16, Children and HIV.
The people you decide to tell may need some accurate information about HIV, including how it is and is not transmitted. This book might be useful for them. Many AIDS service organizations have counsellors who can help you prepare for disclosure to sexual partners, people you have shared drug equipment with, friends, family and co-workers and give you pamphlets you can give to the people you tell.
Support from partners, families and friends
Once you decide whom you can safely disclose your HIV status to, you can start building a network of people you can rely on for companionship and support. Obviously, you will count on different people for different things. Some friends or family members are good for socializing with; some are ones you could talk to if you are feeling down. Still others are those you might rely on to accompany you to the doctor, or to bring you some soup if you got sick. Like all things, it takes time and hard work to find the people you can rely on and build healthy relationships with.
Support from the community
Many AIDS service organizations have counsellors who can provide support either individually or in groups, as well as practical assistance in a number of areas. In addition to these support services, organizations often hold social events that allow people with HIV to meet and socialize together. Volunteering for an HIV organization is a great way to meet new people and build friendships among people who are HIV-positive themselves or non-judgmental about HIV. Volunteering also gives people a sense of accomplishment and worth.
Seeking professional help
If you need more support than friends and family member can offer, there are places you can go for professional help. If you are unsure where to start, many communities have telephone hotlines that can direct you. Some of these are HIV-specific, and some of them deal with all mental health problems. Although many of the mental health hotlines are advertised as crisis lines and are intended for people in an emergency, they are often very willing to talk to people who aren’t in a crisis, but who have questions about where to seek further help for emotional issues.
Either your family doctor or your HIV specialist can help you if you tell him or her how you are feeling. Many doctors do counselling themselves, and many HIV specialists work with social workers or counsellors available to people with HIV who have emotional problems. Psychiatrists are doctors with extra training in mental health issues: your doctor might refer you for an assessment and/or treatment if this is required. Psychiatrists are often helpful if your emotional problems are complicated by medical problems or drug side effects.
There are many effective prescription drugs that can treat specific emotional problems like depression and anxiety. Other drugs can be used to treat certain symptoms, like using sedatives for sleep problems. As with any drug, there can be side effects and interactions with anti-HIV drugs that need to be managed. If you choose to try drugs for an emotional problem, make sure your doctor understands both HIV and mental health issues.
Counselling and psychotherapy
There are many types of counselling and psychotherapy that are used to help people with specific emotional problems. Some of these are individual (where it is just you with the therapist) and some of them are done in groups (where you and other people are seen together by a therapist). Sometimes they are provided in a private office, and other times in a clinic, hospital or AIDS service organization. The type and setting of service you receive will depend on the problem you need help with, and which services are available in your community. Some of these services are paid for through your provincial or territorial health plan or are free through a community organization. A broader range of services will be available privately if you pay. Often, the cost will be reimbursed by an employer health plan, or it will be considered a tax-deductible health expense on income taxes (see Chapter 20, Money matters).
Complementary and alternative therapies
Numerous complementary and alternative therapies can help with mental health problems either by treating the underlying problem or relieving symptoms of the problem (such as sleeplessness or stress). Some of these therapies include acupuncture, light therapy and aromatherapy. Some natural health products have been shown to help depression, but one of these, St. John’s wort, will interfere with HIV drugs. Another, called kava kava, can cause liver damage. Make sure your doctor knows what you are taking. See Chapter 5, Complementary and alternative therapies, for more information.
Living with HIV can be as hard emotionally as it is physically and, given the mind–body connection, one affects the other. No one should face emotional problems alone and there is help available.
The Positive Side– Health and wellness magazine contains articles about emotional health,
- De-stress yourself – Taking time out for you is one of the best things to do
- Lady sings the blues – When you want to crawl under the covers for good, it’s time to ask for help—and get diagnosed
- How does it feel? – 8 reasons why asking yourself this question may make you healthier
Other relevant resources can be accessed through the CATIE Ordering Centre or by calling CATIE at 1-800-263-1638.