HIV can be a lot to deal with. It is not uncommon for people to experience unhappiness, distress, anxiety or depression at some point. Sometimes medication can be useful or necessary, but fortunately there are a lot of other things you can do to look after your mental health and wellbeing.
You may experience periods of fatigue or constant tiredness. The cause could be psychological or physical. Stress and depression are common causes of fatigue, however, constant tiredness may be related to your HIV or other illnesses, diet, or lack of sleep or exercise. If you are feeling more than usually fatigued or the onset of tiredness is sudden or extreme, talk to your doctor.
It’s important to be proactive. Keep doing things you enjoy — things which make you feel good about yourself. Take some time to really look after yourself.
If you are thinking about taking extra vitamins or nutritional supplements, talk to your doctor or HIV specialist to ensure they won’t interact with any other medication or medical conditions.
Nutrition is really important to both your physical and mental health but food can play a more important role than that. You might need to eat on the go now and then but taking some time to sit down and enjoy a meal can give you a moment to catch your breath. Sitting down and eating a meal with someone you like can also feel really good.
Your ability to work may be compromised by your health, and it can be difficult to balance the demands of work and family/personal life. Perhaps you are experiencing periods in which you are unwell or need regular time off for medical care. Taking antiretroviral treatments can also be an issue impacting work, particularly if you are experiencing side-effects (such as diarrhoea). Take some time to make sense of your options. You may want to talk it through with your partner, your doctor, a counsellor or peer support worker.
If you feel you need to have time off, think about how you will talk to your employer before you ask to see them. Remember, you do not have to tell them you have HIV. You may want to tell them or you may prefer to explain that you have a medical condition. You may find it easier just to discuss the symptoms you are managing.
It is useful to remember that the nature of the workforce is changing all the time. You may find there are opportunities for part-time work or work with flexible working hours.
Some women with HIV who are not working find it rewarding to get involved in activities such as volunteer work or study in order to keep busy and to develop or maintain skills and social networks.
Some recreational drugs also interact with HIV antiretroviral treatments so it’s important to talk honestly to your doctor about any drugs that you use, whether regularly or occasionally. Using recreational drugs while you are on antiretroviral treatment can be harmful because:
If you do inject recreational drugs, do not share needles or injecting equipment — even with other HIV-positive people. Use your own injecting equipment or use a new fit every time. This is important to reduce the risk of infection with HIV, hepatitis C or other blood borne viruses.
If you use drugs, you may want to reduce your use or stop altogether. You can seek advice and support through your doctor, community health service, or HIV support group.
Methadone and other opiate substitute therapies may interact with HIV antiretroviral treatment. Negative drug interactions can be managed by adjusting the dosage of methadone and/or HIV medications. Talk to your doctor as soon as possible so they can work out optimal therapy for you. Do not stop taking HIV treatment without talking to your doctor.
For information about interactions between HIV antiretroviral drugs and recreational drugs, see VAC’s Touchbase site. It lists more than 20 drug types and their interaction with HIV and HIV treatments (under the ‘Living with HIV’ section heading). Alternatively, check out ACON’s Stimcheck site or NAPWHA’s Get Smart with Substances webpage.
Smoking is particularly damaging for people with HIV because it will further weaken your immune system. Stopping smoking improves your health within hours, with significant improvement in the following weeks and months. Your risk of cardiovascular disease will decrease rapidly within a year, and within two to six years it will be similar to that of a non-smoker. The risk of having a stroke begins to fall soon after quitting smoking, with most benefit experienced within two to five years.
Giving up smoking is challenging. Remember:
For more information, see AFAO’s Giving Up Smoking factsheet.
While HIV treatments have greatly decreased the likelihood of women with HIV developing AIDS-defining illnesses, there are a number of non-AIDS conditions that are more common in older women with HIV than their HIV-negative counterparts. These conditions include cardiovascular disease, lung disease, certain cancers, and hepatitis B and C.
AIDS-related dementia (once common) is now rare, however some people with HIV develop HIV-Associated Neurocognitive Disorder (HAND). HAND may include reduction in attention, language, motor skills, memory, and other aspects of cognitive function. People may also experience depression or psychological distress.
Some people in the general community become more isolated as they age, including people with HIV. It is important to stay connected and seek support if you are experiencing any loneliness or depression. Given the ‘greying’ of the HIV-positive population, some people have begun looking into retirement plans, including nursing homes or aged care facilities. This is an area the HIV sector is currently working on to ensure facilities are able to offer appropriate care, free from any discrimination. If you would like to speak to someone about your options, contact your local PLHIV organisation.
With or without HIV, your long term health is strongly influenced by how well you look after yourself in daily life. Staying active and socially connected, eating well, not smoking, and moderating consumption of alcohol can significantly improve your long term health.
Usually, bringing (importing) HIV antiretroviral treatments for your personal use will not pose a problem but if you are worried you may want to check each country’s specific customs regulations by ringing their embassy before you go. If you are using a drug substitution treatment (such as methadone or buprenorphine) you should definitely check country regulations as some countries consider substitution treatment to be illicit drug use.
When travelling, keep your medication in its original packaging (labelled with your name) and also your doctor’s prescription or a letter (to show the medication was prescribed) but make sure the prescription does not mention HIV. It is usually best to carry your medication in your hand luggage as checked luggage can be lost or delayed. It is also useful to take some extra medication with you in case your return is delayed for some reason. Looking for prescription medicine in another country can be time consuming and expensive, and your medication may not be available. Your doctor can also provide a letter (not mentioning HIV) to say you are carrying prescribed medication for personal use.
Many people take their antiretroviral treatment at the same time every day which can be tricky when crossing time zones. If you are on a complicated schedule or if you are concerned about managing the time change, ask for advice from your doctor. If you are concerned about how your health will be while travelling, you may want to find out where the local HIV clinic is or get the address of a specialist physician before you travel.
It is very important to have health insurance when travelling, particularly if you are travelling with an existing medical condition. For advice on finding a travel insurance company that offers affordable insurance for people with HIV, contact your local PLHIV organisation.
Last word of advice …. Have a great trip!