Testing positive for HIV is a hard pill to swallow, no doubt. As you come to terms with losing the life you once knew, questions race through your mind, “How did this happen? How could I let this happen? What am I going to do?” If you’re anything like me, you’ve probably been called a liar, have been shunned by “friends” and family, and have had job opportunities taken away- all from disclosing your status.
But what if you’ve been living with HIV all you life? The old life others have had to let go of never existed for you. I wonder if anyone ever stopped to think about the stigma for someone like me. For example, Is it easier to live with? Harder? How does a young child comprehend what HIV is? How does a child deal with their diagnosis, how does their body react to the medication? Do they internalize stigma much sooner or is it easier for the unformed mind of a child accept their diagnosis much easier? Are people born with HIV more likely to develop a resistance? When HIV is discussed, it’s typically geared toward newly diagnosed individuals. However I believe people like myself offer a unique perspective when describing their diagnosis and outlook on life.
I was five years old when I learned about my HIV status. I also learned from an early age how important secrecy was and how deep-rooted confusion and irrational hate could be… even from your own family members. You could say that I’ve never lived a “normal” life; judgment and stigma have always been unwelcomed friends of mine. But who ever lived a normal life anyway, right? While my life has been filled with many tribulations, I’m happy that I’ve been able to meet people who are compassionate and understanding. I’ve had a lot more time than most to come to terms with my diagnosis, and I have grown to understand that ultimately the world needs more education.
I understand that being born with HIV can tempt someone to harbor anger and blame, and that’s totally normal—I don’t blame you. Still, I want to show that just because of your diagnosis, you are not “different” and there will always be someone who will listen to you, who will believe, and who will accept you. The most important part is to believe that your life is not over and that you can make a difference in your life because the only opinion that really matters is your own. Look at me, the person who was once labeled by so many people. I’ve taken power into my own hands to label myself happy and proud of all that I am and have accomplished regardless of HIV: a young woman turning 27 in August and a son that is healthy and HIV-free, could you blame me? 🙂
I live each day with a dirty little secret. Suicide. My sister and I were only 13 and 17 when my mother left; she died just a day shy of her 35th birthday. She was hospitalized after taking some pills three days prior. I lived over 100 miles away. I called that morning to check her status and a nurse said, “Hold on, the doctor wants to speak with you”. Shortly after, a stranger came on the phone and said, “Your Mother just died.” “Why? How? She was listed in fair condition for the past three days,” I asked. I had so many questions, but it was the stranger’s next response that would forever change the world my sister and I have come to know.
“Her heart just stopped.” I was married and five months pregnant when she died, and my sister had been sent to me by greyhound bus two days before. Handling all of the details of hospital releases, funeral homes, etc. is a lot for anyone, but especially for young people. My Aunt who was 27 and seven months pregnant helped my small family deal with it all, and my reliable young husband supported us.
Guilt! Survivors always feel guilty.
Guilt kept me from making that final choice a few times. Since those early days of my life there’s hardly a day that goes by that I don’t think about suicide in one form or another. My Mom’s, my own, and people around me. My dirty little secret. But I never want my children to suffer the way I have, and the way my sister has suffered. My Mom missed a lot by leaving us in July 49 years ago. She never met her grandchildren or her great grand children. I never want to miss out on that special time of life.
When I was first diagnosed with HIV I was in a fog, but in facing reality I knew that my dirty little secret would keep me company and would always be there for me. It was an “out” if I ever couldn’t handle it, or if my family abandoned me.
Do I consider myself suicidal? No! But I think I understand how or why any person takes that escape choice—it’s like a hidden escape. Someone once said it takes more courage to live than it does to die and I believe that. I’m a strong, stubborn fighter and my courage has held me here for many years. Suicide is not an easy way out, it’s final! And there’s no coming back! So I’ve decided to fight the fight a while longer. Besides, there may be some people who’d like to see me gone and I’m not going to give them their wish. Lol.
Talk to a counselor—A 24-hour hotline: (800) 784-2433
Additional Reading: My 10-Step to-Do List for Enduring Depression, Josh Middleton.
My name is Pattie and I am living with HIV since 1992. It’s not easy living with this disease, but you can live a pretty normal life if you want it. You have to work at it. You have to be your own advocate -no one will lead the way for you. I think the more you worry about the disease- it the harder it will be for you. Try to live a normal life and make sure you take your meds every day -at the same time everyday -no matter what. There were many times in my past that I would party all weekend and didn’t eat- but I still took my meds at the same time and that is one reason I believe I am still living today.
“Your tracks will never end as long as you go to meetings and make friends.”
The support groups really helped me to understand what my body is going through. You are not alone -there are a lot of women living with HIV. You have got to have the will to live when things start to go wrong with your body. My friends from the groups, that I go to, really help me in life- where to get help with any problems that I have. Talk to people in your situation who are HIV positive.
For the first 20 years when my husband and I were diagnosed, we didn’t tell anyone. So all of those years we never talked about it unless there was an article in the paper or we had a doctors appointment. I didn’t know anything about HIV- only that it kills you. When the word HIV or AIDS came up I would freak out and leave the room and conversation because it wasn’t good things -it was always bad things people said. All the people were so uninformed- it used to get me so mad. They always talked down about people living with HIV. Some doctors didn’t even want to touch me or take care of me- they looked at me like I had leprosy. But when I found out about the support group on HIV, I was the first one there. I wanted to know and learn about everything that went along with the disease.
I still have a lot of life in me and many good, good friends that have helped me get to this point in my life. I am Happy and most of all UNDETECTABLE of this disease because I always took my meds every day at the same TIME. “Your tracks will never end as long as you go to meetings and make friends.”
We all feel at times that we are defeated by our past mistakes or past experiences, but we have to believe that we are overcomers! And, no matter what happens and comes our way we will defeat it.
- These are some things that help me to overcome my inner enemy.
Changing my mind to what can go right instead of wrong
- If I am thinking that am going to fail at something, I tell myself I will pass.
- Expecting the best will happen when my family and I get together.
- He or she will accept me, as I am, when I tell them my diagnosis, and if not, it is not the end of the world, there is more life to live. They’re missing out, not me, I understand that rejection is God’s protection.
- Using affirmation:
- My self-esteem is high because I honor who I am.
- I am grateful for my healthy body. I love life.
- As I forgive myself, it becomes easier to forgive others.
– Louise Hay
- I am beautiful.
- I will succeed
- Using humor and fun around someone that makes me happy.
- Going out to eat.
Remind myself that the negative thought that I’m thinking is only negative; it has no power other than what I give it. When I give it power, it controls my destiny.
Watch your thoughts, they become words.
Watch your words, they become actions.
Watch your actions, they become habits.
Watch your habits, they become your character.
Watch your character, it becomes your destiny.
I surround myself with positive people, who are headed in the same direction as me, or who are already there. Don’t be afraid to jump into something new, live outside your comfort zone. Enjoy life!
I battle with low self-esteem because of things I have been through in my life, or things that have been spoken or done to me.
I never knew how to break free from it, I always felt less than anybody around me because of the way I looked or how I spoke and all I wanted was to feel love. I was finding love in the wrong places or things. I was looking for a way out, wanting to know how to escape everything within me and learning how to love me.
These are ways that help me to be free:
- Taking responsibility for my own life and decisions, which can be hard at times, but I have to do it.
- Forgive, which is a choice, not a feeling. Never give a person or something so much power over me that I choose not to forgive.
- I no longer rely on someone else’s validation to feel good about myself. When I started taking responsibility for myself, it began to build my self-esteem and stability within and gave me hope. I started feeling good about myself.
- Self-esteem problems can damage many important parts in my life, like relationships, ambitions, achievements, and health when playing the victim role.
I never want to be powerless and helpless another day in my life. I lost many years of my life by being powerless and helpless. I was giving someone else command over me, and allowing them to have control of my responsibilities and relinquishing my God given power and will.
I replace a negative with a positive by:
Changing my mind to what can go right instead of wrong. I learned the mind can only think one thought at a time.
- Using affirmation.
- Using humor and fun or being around someone that makes me happy.
- Reminding myself that the negative thought that I’m thinking is only negative, it has no power other than what I give it.
Most of all fall in love with me!
Support groups are everywhere. There are support groups for drinking, sex, gambling, health issues, etc. Having a problem that requires a support group is hard enough but then you add the fear of attending that first meeting. You don’t really know anybody, but you do know that they all have the same problem going on that you do and that’s a comfort. A million thoughts are running through your head when attending the first meeting. Will I have to speak? Am I being judged? How will this help me?
Most support groups are nonjudgemental and a safe zone where you can share your thoughts and feelings with people who understand what you’re going through. Being the newest member of anything is always hard, but being part of something that is helping you better, or get through your life is the best.
I was a new member of a support group about three or four years ago and I was terrified. I didn’t know anybody and was hesitant about people finding out about my status. The ladies of that first group were wonderful, though, and made me feel very welcome. Now it’s years later and this group has become such an integral and important part of my life. I love every single person so much and I can’t imagine how I would get through life without their support.
Support groups are there to help us and most of the time they end up being our biggest supporter. I encourage everybody to try one.
As human beings, we automatically are taught to nurture others and that makes us start on the road of learning to”cheat on myself.” I never thought about that until today. I should be on the path to help myself when it comes to things like bubble baths, going clothes shopping, getting my hair done, etc. I should be open to learn how to see the positive in everything and learn how to enjoy everything that I am doing. If not, I am“cheating on myself.”
Sometimes I have family, friends, or significant others who try to take all of my time away and sometimes it feels as if I am being taken advantage of. The time that I have set for myself should maybe be marked as an important appointment on the calendar and even put it on the phone with an alarm. When I do this, I will make sure to tell others that I am going to be busy and stick to it because I deserve it and so do you. It’s just as important to do this for myself and makes me just as important as someone else is. If I stand up and say “NO” or just saying that I am busy, that should be enough. I don’t feel guilty because this is me that requires rejuvenation.
Just because I learn to say “NO” doesn’t mean that I don’t love others, it’s just that I have decided to do things for me as a women with HIV and it makes me learn about myself, then I will be better at helping others. As a matter of fact, it makes me stronger and maybe I have learned not to “cheat on myself.”
I decided to write about this because I have been letting others dictate my choices and that is not going to continue because it will stress me out and cause me to be sick. “Cheating on myself” makes me forget all of the little things that make mehappy.
Get back to doing you, and stay on track, so that you will be able to have strength to show others why you are so happy, maybe it will catch on.
What makes you cheat on yourself and what would you like to do for yourself that will help you stop?
We have all experienced challenges with providers, but boy did I have an interesting experience… Continue reading We Have To Stay On Top Of Our Own Medical Care