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06 – Caring for Individuals with HIV

The Stress of Living with HIV and AIDS

Like anyone else, it is important for people living with HIV and AIDS to be psychologically healthy and be equipped with skills that they will need to manage their diagnosis. This is also true for those with whom they regularly interact – including partners, children and friends.

For those living with HIV or AIDS, common needs are:

  • Managing medications
  • Keeping health appointments
  • Accessing support resources available in the community
  • Counseling to reduce isolation and promote acceptance
  • A safe place to find social acceptance and support – such as a support group
  • Ways to generate conversations with others about their diagnosis an what it means
  • Accurate information about HIV and AIDS
  • Physical care when they are sick
  • Tools to come with everyday stresses of life

As mental health professionals, we know that many factors come into play when it comes to mental illness or challenges. Genetic predisposition (biological factors), family history, stressful life events, trauma, neglect, and abuse are all common factors that cause mental health problems.

For those living with HIV or AIDS, there are added pressures that can contribute to this. For example:

  • Accepting their diagnosis
  • Difficulty accessing services
  • Cost or access to medication
  • Feeling socially isolated and that they are “on their own”
  • Having to tell others about being HIV positive
  • Continual needs related to managing medications and other health needs
  • Facing stigma and discrimination

Those living with HIV and AIDS face challenges related to their diagnosis, but also struggle with similar things that all of us face, and must manage their health needs along with everyday life challenges. 

  • About 1 in 4 people who have HIV also suffer from depression
  • People with bipolar disorder and schizophrenia are much more likely than the general population to have HIV

Mental health disorders can interfere with a person’s ability to take his or her HIV medicines as prescribed.

Watch this powerful YouTube video from My HIV Treatment Hang-Up (2015): 

The following are stories from people living with HIV or AIDS, and who have a variety of backgrounds and unique situations. Their stories provide insight into the experiences, challenges, and needs faced by those living with HIV. Understanding their perspective is one of the first steps to be able to effectively support their needs.

  1. Martha (Cameron, 2015) – A HIV awareness advocate, and HIV positive mother with two HIV negative children:

I don’t think anything can prepare you for the moment when they unveil the piece of paper that contains your fate. Even though the odds seemed to be against me, I was not prepared to be told I had HIV. Turns out, the doctor had worse news: It was actually an AIDS diagnosis and the doctor gave me 3 to 6 months to live.

Almost 12 years year later, I look back and can still feel the hopelessness after hearing the news. I was in disbelief of what seemed inevitable. By that time in my life, I had lost many family members to AIDS. I was born and raised in Zambia, and it felt like we lost a generation to AIDS.

The support and encouragement of family, faith leaders, and colleagues saw me through the sickness, depression, and stigma that came with the diagnosis. Thankfully, I received life-saving medication and treatment.

Life after my diagnosis
I met my husband when he visited Zambia on a mission trip. I still think he is crazy for falling in love with me, and he thinks I am crazy for marrying him. I guess we are crazy in love. The acceptance that I have found in my husband and his family is a miracle in itself. I had given up all hope of getting married because of my status, so the acceptance that I found in my husband and his family feels like a miracle.

We both knew we wanted children, but it was a scary prospect. There were so many “what ifs,” including the thought that I might not be able to see my child grow up.

We went out of our way to find and work with a doctor who could help us prevent mother-to-child transmission of HIV and perform a C-section to ensure the health of our child.

My first son was born HIV-free in 2009. We had a second son in 2011. Both my sons and my husband remain HIV-negative.

My life feels like a miracle, but it’s also just as crazy as everyone else’s. My life is all about kindergarten, music lessons, birthday parties, Christmas, Transformers Rescue Bots, and Power Rangers. Other than taking two antiretroviral (HIV medication) pills at bedtime — a drastic change from taking six to 10 pills twice a day — my life as a working mum is practically normal.

Today, I work with an organization providing direct services to women of color who are living with or at increased risk of HIV in the Washington, D.C., metro area.

I believe I have a responsibility to educate women and create awareness about HIV/AIDS treatment and prevention. I want all women living with HIV/AIDS to have an opportunity to access care and, should they desire, to find love and start a family. You, too, can have an HIV-negative child.

I know that education and awareness will help reduce stigma, too. I hope that by sharing my story, I can help others realize that HIV/AIDS doesn’t define you. I may be a woman living with AIDS, but more importantly, I am a mother, wife, and advocate.

  1. Benoite (Avert, 2017) – Finding out her and her partner are HIV positive

In September 2008, my partner had a headache for three days. He’s never been to the doctor before – he was raised on an island and never had any type of health care. I knew it was serious when I offered to take him to the ER and he agreed. Three days later, he was diagnosed with AIDS and a raging case of  meningitis. His CD4 count was just 3.

I went for a rapid test in the clinic attached to the hospital and never expected the answer to be that I was positive. 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.

I was paralyzed with fear and couldn’t bring myself to test my little girls (they were 1 and 2 at the time). Someone at AIDS Action told me it would be ok to wait a bit, and it was like permission to get myself together first. I needed that and it made all the difference. My man was so sick, we had to change insurance companies, change pediatricians, and I was still at work full time… I just knew I’d be frozen if I found out bad news about my babies. I’d had a negative test during pregnancy number 1 and I think I must have told the midwife she didn’t need to test me for pregnancy number 2 – I was in a monogamous relationship! I still think my man got it from his ex-wife years ago… hopefully that’s true. Anyway, when I was ready, I got the girls tested and they are both negative – Thank God!

I immediately started seeing the docs, and since my CD4 was in the “grey area” they didn’t need to push me onto meds. But when I eventually started, in Nov 2009, my viral load dropped like a bad habit and my CD4 crept up to over 850!

I used to feel like if I saw a drop of my blood that it was disgusting, dangerous to my kids and tainted. Since being on meds, I don’t feel that way anymore. I know I need to take precautions, but I don’t feel TAINTED, and that’s huge for me.

I’ve disclosed to more people than I expected to at first. It’s getting easier as time passes, as I can explain that I’m okay and doing well on meds. My relationship with my partner is strong, my kids are healthy, and I have a supportive and loving group of family and friends. I’m blessed!

  1. Janine (Me, Myself, & HIV, 2017) – An activist, single mother, and not your Typical HIV+ demographic

I am a 28 year old heterosexual Caucasian woman living with HIV. I am not in the major demographic of people living affected with HIV, or categorized as a ‘high-risk’ group, but does that mean my story is less important?

You don’t need me to tell you that there is stigma surrounding HIV/AIDS. Because of that stigma, we who live with HIV are often afraid. Rather than uniting to show the world that HIV has a face, we hide and become shameful for having this “dirty disease”. We often hear about the populated areas that are affected with HIV, but we do not hear about the stories of those who are living with HIV in the lesser affected areas, living in fear of becoming ostracized by our peers, families, friends, and by the public in general.

When you go to large urban areas, there are signs, billboards, and various other platforms that constantly warn about the dangers of HIV. They warn EVERYONE; whether gay, lesbian, straight, white, black, Hispanic, Asian, Middle-Eastern, purple, pink or blue, because EVERYONE may be, and IS affected by this epidemic. Yet when attending seminars or conferences, we only hear about how we need to put funding where the “gays and blacks” are. Why have we not realized that we should treat this as a disease that affects the entire human population?

A common reaction when I disclose my status to people is “but you’re pretty and smart”, or “no way, seriously?” Both comments only reassure me that I need to continue speaking out and informing others because of the ignorance surrounding this disease. I am a young, Caucasian, heterosexual woman living with HIV. To the outside world I am too “normal” looking to be affected, let alone infected with HIV. I so often feel that because I do not fit into the larger demographic of who is ‘at risk’ or who is affected by HIV, people feel that what I have to say is not as pertinent. I feel people do not want to hear about HIV, and that the individuals who work in HIV prevention and education do not feel that my story is as influential. Why? Because I am a straight white woman. Do I need to be someone or something else for the public to feel that what I have to say is important?

We all have a voice, and we all have some issue that is close to our hearts. No matter what it is, no matter who we are, or what demographic we fall in to; we are given a voice. Those of us in America especially have a freedom that many do not have – we owe it to ourselves and to the ones we love to stand up and talk, yell, shout, even scream if that is what it takes. Our voices need to be heard. I talk about HIV because I have it and it affects me and those close to me. Don’t wait to talk about your issue.

  1. David (Me, Myself, & HIV, 2017) – An educator, activist, and HIV empowerment blogger

The feeling of being alone had been festering deep within me for years. It began after I was diagnosed with HIV. As soon as I was diagnosed I knew that unless I loved myself first, I would never find true love. Even then, it still took me several years to allow myself to even think about trusting another partner.

I had learnt many lessons along the way on trust and relationships from disclosing my status to my close friends. These lessons helped pave the way for new relationships and potential dates. Dating with HIV is no different from dating someone who has an eating disorder, or depression, or any other illness. I have come to realize that unless someone is educated on HIV, it is very hard to have an honest and open conversation with them about the issues. Though this does not mean you cannot be a guide to their understanding and education.

When I date, I’m honest about who I am, what I am and what my personal situation is. I explain very simply; “If you want honesty, I am your man. If you want foolishness and hypocrisy then you can carry on looking because that’s not me.”

I believe we make dating harder than it really is. We have way too many expectations, and way too many questions. I have learned that the most successful relationships are based on good communication, time, and accountability. I’m not denying that dating with HIV comes with its challenges, but they CAN be overcome.

People always ask me: “How do people react when you tell them about your diagnosis?” And while reactions often vary I always stress: “If you know anyone who enjoys drinking in excess, smoke reefer, cussing excessively? Then why can’t you be ok with what I do?”

That startles some people when I say it, but it’s honest. HIV for me has a small residence in my life. It does not reflect my character, nor does it affect my integrity. It is something that has happened, and when that issue can be communicated between two people and understood, the sky is the limit.

For those who are having a hard time dating with HIV – first, love yourself more than you love the thought of dating someone. Life is a process, go with the flow. In my journey with HIV, I have had so many people desire to date me. Not because of my diagnosis, but because of my passion to help educate the masses about HIV, and about the correlation between depression and newly infected candidates.

So let me conclude with this: find something deep within you that allows for your passion to glow. That in itself will not only draw people closer to you, but will drive you to know your self-worth in the process.

Along with parents being very impactful on how their children make decisions, Families who are impacted by AIDS often struggle with poverty, homelessness, drug abuse, and challenges related to belonging to an ethnic minority or ostracized group. 

A family member being in poor physical health can impact other areas of the family – such as financial stability, level of stress, and amount of social support. Psychological stress on parents is impactful for the entire family. In fact, much research has shown that the more parents are stressed, the more behavioral problems children exhibit, including lower school attendance.

Stigma against HIV often prevents open and honest communication within families, even preventing families from disclosing their HIV positive status to one another. Mothers, for example, may decide to not reveal their HIV status in order to protect their children from being ostracized.  Children may be put in situations where they are expected to keep the family secret, both worrying about their family members infect with HIV and about how they themselves would be perceived if others knew.

For children with HIV, disclosing the child’s HIV status is often a hard decision for parents. They first must think about how to explain the diagnosis to their child, then consider how this information will be shared outside of the family.

Here are some ways that HIV can affect family members:

  • Others react to a loved one’s diagnosis in a variety of ways – but due to stigma, many reject their HIV positive partners or friends and begin to build distance
  • For children, understanding what is happening is critical – yet they are often left out and suffer in silence because caregivers do not know how to talk to them
  • It is common to experience fear and anxiety about their own risk of infections
  • Many people feel angry about their loved one “bringing this onto them”
  • Loved ones often feel uncertain about the relationship – will their loved one die?
  • They are unsure how to cope with caregiving responsibilities; many feel incompetent and powerless
  • Depending on the stage of the infection, loved ones may be disturbed and upset by physical and mental deterioration of their loved ones

In the end, loved ones of those who are HIV positive need many of the same things that those who are actually infected with HIV, including acceptance, support, love, and skills and resources needed to manage HIV-related needs.