Last Updated: March 20, 2020; Last Reviewed: March 20, 2020
This interim guidance reviews special considerations for persons with HIV and their health care providers in the United States regarding COVID-19. Information and data on COVID-19 are rapidly evolving. This guidance includes general information to consider. Clinicians should refer to updated sources for more specific recommendations regarding COVID-19.
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.”
It’s a hard job being a caregiver for an adult child. Sometimes it’s harder than when she was a little girl.
My daughter suffers from “Sickle Cell Disease” and had a severe stroke when she was only 20. Before that she was a college student and very independent. Her stroke made her almost helpless. Thankfully she survived and grows stronger everyday.
I had to take charge of her care at home. I learned her medicine schedules, side effects, when to re-order her meds and pick them up. I cook her meals at her scheduled times and what doesn’t interfere with her meds. I also cook what she likes and I have to refuse some sweets and snacks that are bad for her.
I have to follow her doctor’s orders, keep her appointments, and schedule around my own doctor requirements.
She receives some outside help with a caregiver aid however I am still her main caregiver and support. I bathe her and take care of her personal needs and put her to bed.
My social life is almost non-existent but I try to get some much needed time for myself.
My charity program is a time away and I attend my support groups when I can.
My own health is not good but I push forward for the needs of my daughter.
That is what it means to be a Mother. I always answer to “Mommee, Mommee”.
How can we be supportive/inspirational to other family and friends when we feel so…. lost ourselves?
I have never been a what I call the “in your face type” with “things are wonderful and just smile”. I am a realist and like to face obstacles head on with truth. I can be supportive when someone is down and needs immediate support but I wonder later was that the right approach.
I am not a “Debbie Downer” but I believe in telling the truth when someone needs it. Some of the fake support others dish out doesn’t faze me nor does it help in the long run.
Facts, not fairy tales, I guess is what I believe is best. I know, I know “some” can’t handle the facts but I feel they need truth and facts head on to ditch the fairy tales.
How does everyone feel about that or how do you give support for the doom presently approaching us?
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.
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. -Lao Tzu
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 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.
I was watching The View when I heard Cookie Johnson say when her husband ”Magic Johnson” confessed that he was HIV she had to make a choice. Her choice was to leave and let him die or stay and help him live!
She said how hard it was for her when he had to close himself in a room and call all the women he had, had sex with over the past 10 years. I heard her say this and I thought “This is my story in reverse.”
I’m the infected spouse and my husband decided to stay and help me live. He stood by while I had to talk to the health department and disclose my sexual contacts. He wasn’t literally in the room but he knew I was online and on the phone giving names and contacting those I may have exposed or who may have exposed me to HIV. He chose to stay and in the early days or months he probably thought I wasn’t going to be in his life and our children for much longer. He chose to stay and help me fight this disease. He was tested within hours of my diagnosis and tested negative. I thank God for that. He chose to care for me when I couldn’t get out of bed. He drove me to every appointment to sign up for care, for medicines, and everything connected to infectious disease. He keeps me on schedule and checks for any new side effects or symptoms. He drives me to the hospital when I have to go and stays until I force him to go home and rest. I wouldn’t say he’s a Saint but he’s pretty darn close to it.
We still argue as many couples do that have spent so many years together. They are not big fights more of disagreements because we don’t agree on a lot some days. One thing I guess we do agree on and that is that it’s better staying together than being apart. And alone.
I love this man whom I decided to marry so many years ago and will try to make up for the terrible choices I made in a bad time in my life. If he asks something of me I can not refuse and part of that request is keeping my status private from most of our life. Secrets are hard for me and lies are a close second.
Now in our later years we care for one another. I guess the part of the marriage ceremony fits here. “In sickness and in health” We are the elderly couple sitting together on the park bench or walking on the beach. We may not be always holding hands but we will be very close together.
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