Illinois Public Health Association, HIV Care Connect
In recognition of May as Mental Health Awareness Month I wanted to highlight Mental Health and HIV.
Mental health problems can affect anyone, not just people living with HIV. In fact, roughly a quarter of us will experience a mental health problem at some point in our lives. There are many different types of mental health problems, such as depression, anxiety disorders, low self-esteem or personality disorders. They’re all recognized illnesses and symptoms can vary in severity and frequency.
Living with HIV can cause additional worries that make you more likely to experience a mental health problem. But you’re not alone: treatment and care is available and you will get better. Your mental health is just as important as your physical health, so make sure you seek help when you need it.
“While I no longer dwell on the past, I do have days when I feel depressed because of the whole situation. But then I look at my life and the things I have achieved and that makes me feel better and more determined to do something with my life.” – Anonymous 1
I’m experiencing mental health problems
If you can identify what has caused your symptoms, you may feel more confident to access support sooner. For example, the following scenarios may have an impact on your mental health and wellbeing.
Learning you’re HIV-positive
Learning you are HIV-positive can be a very emotional experience and may be hard to come to terms with. The healthcare professional who gives you the results of your HIV test will help you talk through any thoughts you may have, from the initial shock to concerns about how it will affect you or your relationships.
“I fell to the floor, cried like I was in a soap opera, and asked: “who’s going to raise my children?” The tester was so amazing, so helpful in talking me down from this reaction, telling me he’d known people living with HIV for 25+ years. I latched on to those words like a life vest those first few months.”
– Anonymous 2
Starting treatment for the rest of your life
I personally waited years to initiate HIV treatment. It’s natural to worry about getting ill because of HIV, but it’s important to remember that antiretroviral treatment will prevent this from happening.
Some people find it difficult to start treatment as it confirms the reality of living with HIV. Other people find this helps to lift their anxiety as they know that treatment will help to keep them healthy.
“It’s getting easier as time passes, because I can explain that I’m okay and doing well on meds.”
– Anonymous 2
Telling people about your diagnosis
It’s likely that you feel nervous about sharing your diagnosis (disclosing). Remember that it’s entirely your choice if you tell anyone, who you tell and when. If thinking about it causes you a lot of stress, maybe now isn’t the right time.
“Just remember – trust the people you tell that they aren’t going to judge you, but help you, and be there for you.” – Anonymous 3
Stigma and changing relationships
Many People Living with HIV (PLWH) experience stigma and discrimination from people who don’t understand HIV and have negative views about it. This can be very hard to deal with, especially if it comes from people you are close with and these relationships change as a result.
It can help to have information about HIV – this way you can explain what it means to live with HIV. You also may find comfort in talking to people that you trust, especially a healthcare professional or support group.
Side effects of antiretroviral drugs (ARVs)
Depression has been linked as a possible side effect of certain ARVs, so it’s a good idea to tell your healthcare professional if you’re experiencing mental health problems, or have done in the past. This will help them plan the best treatment and care for you and switch your drugs if necessary.
How can I look after my mental health when living with HIV?
It’s normal to feel emotional distress from time to time when living with HIV. Try to recognize when this might be happening so that you have the chance to address these feelings. Talking about the way you’re feeling is often the first step to getting better. Try the following self-help tips.
Talk to family and friends
Sometimes it’s hardest to talk to those you love because you might be scared of their reaction or of upsetting them. However, they could be the greatest source of help and support because they already know you and can help you to feel less alone.
“I do talk to very close friends about it – it’s important to have at least one person who isn’t a clinician that you can talk to because they are helpful.” – Anonymous 1
Access support groups and helplines
If the support of family and friends isn’t possible, you might prefer sharing your feelings with someone at a helpline or support group. The fact that you don’t know these people personally may help you to talk honestly about your feelings and living with HIV. In return they can offer you practical and emotional wellbeing advice.
“Family is a great support system to have through it all…but if you don’t have that, there are numerous support groups that work with HIV infected persons.” – Anonymous 3
Share your feelings with your healthcare professional
Your healthcare professional isn’t just there to give you treatment and check your viral load. They also need to know if you’re experiencing other difficulties that could affect your overall health, such as mental health problems. They may suggest treatment that includes antidepressant drugs or talking therapies, such as counselling or cognitive behavior therapy (CBT).
Know what to look out for
Some people who experience mental health problems have trouble taking their HIV treatment properly and may miss doses, skip appointments or not eat a healthy and balanced diet. If this is happening to you, seek support and advice from your healthcare professional or pharmacist.
Exercise and staying healthy
Getting enough exercise, sleep and nutrition is important for a healthy mind and the benefits can be even more significant for anyone who is living with HIV. Many people find that changing to a healthier lifestyle helps with some of the symptoms and enables them to get some control back in their life. Drinking too much alcohol or being dependent on drugs could also have a big impact on your mental health and the success of your treatment.
Don’t be too hard on yourself
It’s natural to have negative feelings and feel fearful about what the future brings. Often it’s about learning how to cope with feelings of uncertainty and, in many cases, this can be hard to do without the support of loved ones or a mental health professional.
“I have learned a lot about myself since my diagnosis and how I deal with things; I have become more headstrong and I don’t give up very easily.” – Anonymous 1
Finally, do things that relax and interest you
You may lack interest in activities that you used to enjoy, but keeping active is one of the best ways to break the cycle as it lifts your mood and energy levels, increases your appetite and improves your quality of sleep. Even small activities such as a walk around the park, 10 minutes of yoga or some gardening may help to relax and distract you from any negative thoughts.
“Find some sort of positive support from the time you find out until the time you can rely on yourself. You are not the disease – it is a part of you.” – Anonymous 3
Chris Wade, HIV Care Connect Project Coordinator
Illinois Public Health Association, HIV Care Connect
(309) 453-9042 mobile
HIV Care Connect is a program of the Illinois Public Health Association and is funded by the Illinois Department of Public Health