Monthly Archives: April 2023

Different Faces of a Caregiver

Advocacy, Support, Taking a Stand,

The definition, according to Merriam Webster, for a caregiver is, “a person who provides direct care (for children, elderly people, or the chronically ill).” Another dictionary defines it as, “a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.” I define it as someone who shows love, compassion, and empathy for anyone who is in need and it is within their power to help.There are three different faces of caregiving that I can identify with and would like to describe briefly.

Caregiver Wife. As a wife, I promised to love and support my husband through the good and the bad. I promised to be there in sickness and in health. When I found out that I was HIV positive, (before my husband received his diagnosis) I was devastated. However, I had to tell myself I was still alive and it was not a death sentence. I was fortunate, yet unfortunate enough, to have had previous family members who had the AIDS diagnosis. Therefore, I was able to see the good and bad of the virus before it affected me personally. After we found out my husband’s diagnosis, I went into caregiver mode.

I honestly believe that I was more concerned about him being healthy than myself, mainly because he had to start medication a lot sooner than I had to. I made sure we began to eat better, we both stopped drinking and he stopped smoking. We did everything we were told and instructed to do by our doctor, in order to make sure we did not end up dying prematurely, like my family members. After sixteen years, I still make sure we take our meds at the same time in order to continue that bond of care because we are in both our marriage and this fight together.

Caregiver Mother. As a mother who is HIV positive, I make sure I am constantly talking to and engaging with my own children, as well as their friends who have grown up with them, whom I consider bonus children. I am always talking to them about safer sexual interactions. I explain to them the dangers out in the world that they cannot see with their eyes. And I share with them, as often as possible, about the cost that comes with making bad decisions, if they choose to be reckless. When my boys were minors, I had them tested for every STD and virus known, and I encourage them to continue to do the same now that they are adults.

Caregiver Friend. Having someone you can call a friend for years is a great thing. But having to share with that friend a secret that you are ashamed of is very scary. You are afraid of how they will react because sometimes you can count on them more than you can count on your own family members and you don’t want to ruin the friendship. It is heartbreaking when you learn that those friends, who you have known and loved for years, have been hiding that same shameful secret that you have been hiding for years. And, when you are confronted with that truth, you are then saddened because you think of how you could have helped each other deal with it together but instead, because of the shame, you suffered in silence.

As a caregiver friend, I decided to create an atmosphere of support for my friends who are positive (living with HIV), as well as for their spouses, because we have to keep the family unit strong. When I began to attend a support group for positive women, I felt the disconnect from my husband. I decided to talk to the other women about how they were coping at home with their husbands. I wanted to know what type of support their husbands were getting, if any, aside from what they were providing. I started to see that again, we had the same problem. I then decided to organize a support group that would support the unity and bond of couples. We began meeting once a month which changed to twice a month. Then, that changed to celebrating birthdays, wedding anniversaries, and vacationing together. The only thing that has kept the group from growing and flourishing is COVID-19. Needless to say, I am planning an event as soon as I can, one that would be safe for all in attendance.

Being a caregiver comes naturally for some, others have to go to school in order to learn how to become a caregiver, and then they are paid to do so. I prefer to be the first type of caregiver. I truly believe this gift was instilled in me as a child from my grandmother, my mother, and my aunts. I love to help others striving to be successful. I love to help others make a difference in their own lives for the better. I think I will continue to enjoy my three different faces and aspects of caregiving, and would not change it for the world. In the beginning, the diagnosis I received was devastating. After many years, I see it has been a blessing. I have been living a positive life since being “positive.”

– Nickie

 

Still Standing

Emotional Health, Inspiring Stories, Support, ,

Several years ago, I was at a point in my life where I was suicidal. A close friend of mine was telling me about a pastor, “This pastor is trustworthy and very supportive. You can go and talk to him about anything. He will give you the best advice and you don’t have to worry about anything.”

I was at my breaking point and I needed help. I don’t even remember calling the pastor. I just reached out. I just remember being in tears. I don’t know if I was drunk, I don’t know what was going on. I just knew I was thinking about suicide.

Wanting to trust someone and seeking help and guidance in a spiritual way, I went to see the pastor that my friend suggested. With the pastor, I shared everything from before my diagnosis of HIV, after my diagnosis, my good, my bad, my wrongdoing. I told this pastor everything. It was so comforting. The response that I received, the reassurance at that time, was so real and so loving. I just felt so comfortable that there was a home there for me and my children.

I trusted this person so much and this was my last resort for trust. I had been betrayed by family, friends, the streets, and by the school system. Sometimes, I feel like I even betrayed myself. I wanted to be accepted, to know that I’m not any different than anyone else. To not be put in a box or feel like I’m in a cage because of what I’m telling. All I was looking for was acceptance.

A few months later, after disclosing my HIV diagnosis to my pastor, we were at a church event, but there was also a group of people there that I didn’t know and didn’t trust.

During the sermon, the pastor began to speak about my health situation. At first, my name was not brought up, but my health situation was. My pastor didn’t refer to my correct diagnosis (HIV), but he referred to it as “sick.” That hurt me, knowing that it was me he was talking about.

As he continued with the sermon, he disclosed my name. I felt so stripped, bare naked with no cover, and everyone was waiting on my response. I couldn’t run anywhere. I was right there in the middle of everybody and they all knew who I was. I felt betrayed and couldn’t believe he just straight up did this to me after I had told him what happened to me, and to turn around and call me “sick” and expose my name was a straight betrayal.

I can’t really explain my feelings at that time; it felt like someone just pulled my heart out. It just had me feeling like the world was not real. Like God was not real. It made me feel like, “I turned to you and this is what you do to me.” At the time, I didn’t realize that men can use God as a cover-up to do their dirty work. I did not have any thoughts of suicide, but at that time, I felt like God did betray me like there is no God. I kept asking God, “How could you let someone do this to me after I let them know what’s going on?” I looked to this man of God, I came to him to get to God, but I know now that it was ungodly, it was not right.

Even though this happened to me, I think others need to disclose their status to their congregation because not everyone is educated about HIV. People will take stuff, will run with it, even if they have a mature mind. The church is like a hospital, people come in, they have different issues: depression, anxiety, cancer, life issues. The church is the mental hospital, the healing hospital, the counselor, the teacher. I feel like people should be able to walk into the church, feel relief in the church, but you can’t because every church is not the same. Every leader is not the same spiritual advisor.

I think pastors should put themselves in that person’s shoes and say, “What if this was me?” Look at it as if it was one of your loved ones – do not judge them. Let them know it’s okay. Always have open arms, listen, pay attention, be real. The worst thing you can do is betray them. When you betray them, you’re betraying God, because God put them there so you can reassure them. This is God’s way of using you to bring an individual to him. We need more people to be real.

Be careful who you trust. I’m still learning. But, also have faith and trust in God. I know now that you don’t have to turn to people to reassure yourself that God is real. Would you rather stand by God and be judged by the crowd or stand by the crowd and be judged by God? I say that because the crowd can leave your side at any time, but God will always be there.

– Unhurt