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    Every year the day before Thanksgiving is a very important day for me …it’s the anniversary of the day I was diagnosed HIV+. 37 years ago.

    This year is very different because this month I was diagnosed that I have Parkinsonism. One of the symptoms is having balance issues but I’m stubborn and Monday I was out hiking (with my trekker poles) and I fell …hard. I had another fall a month ago. The first one I injured my shoulder but I didn’t go to PT yesterday because I felt light headed and kind of fuzzy and I have had a weird headache continually after the recent fall. It’s different than the headaches I get with the debilitating migraines I have been dealing with from Covid Long Haul. So I fear I may have a concussion. One more health problem, but it will fade. I can handle it…because I share this writing at a time when despite today’s challenges I feel very blessed because I survived so much from dealing with AIDS. PLEASE READ BELOW.

    The day before Thanksgiving this year will mark the 35 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here, I am also sometimes consumed with guilt … Survivor’s Guilt. “Why me?” Why me in an opposite sense. Not why me… why did I become HV+? But why me … why am I still here and so many others are not? I am part of a small minority who made it through the 80’s when AIDS was considered a death sentence and are still around to talk about it.

    Today many people call me a “Long Term Survivor.” They tell me that it is a miracle that I am still alive, and they honor my life and fighting spirit...but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS.” I had choices to make but none of them projected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people who came together to listen, share, understand, support and love each other in a way no one outside the group could ever imagine, could ever believe… could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.

    We talked of our fears: of death, of pain, of hurt and how some of us were dealing with loved ones who did or did not know our plight, did or did not support us. We talked of our community that so many folks in the public could never understand. Those who misunderstood us, misunderstood HIV & AIDS, and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with, and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown. People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl.
    People assumed we were all gay or drug addicts. These were obviously misconceptions sometimes, but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, including the possibility that they too may become HIV+. There were many who even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation, and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand.

    At our meetings we shared horror stories: of families, partners and friends who turned their backs on some of us and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds). We talked of some doctors in the medical field from the military to the public who saw HIV+ patients wearing yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overblown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.

    I am blessed to still be here today. It is easy to question why, and it can be very hard to have to process these reflections. So, the day before Thanksgiving is my anniversary. It is impossible for this holiday to come and go without my being reminded that I was diagnosed that day in 1987… 35 years ago. I later figured out that I contracted the virus in 1985...37 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 23 years ago and have stayed the same.

    Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you believe things. I think I am blessed and the God of my understanding has looked over me. Why? I am not sure. Maybe I will be able to accomplish some things, to give back, to take my experiences and by sharing them make a difference in people’s lives. Or maybe I am just still around because I have been hanging on. Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that may change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
    So, in retrospective sadness and current pride, I look forward to this anniversary every year and want to honor the spirits of those friends who I lost from those support groups, to honor those who I never met who shared our path, to honor all those hundreds of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss…

    Moshe Mark Adler
    November 27, 1999
    May 24, 2021 edit

    UPDATE: In this time of Covid, sadly I recognize death tolls like those from another pandemic: AIDS (with no vaccine even after almost 40 years). I looked them up...the numbers, including current ones, are staggering:

    690,000 [500,000–970,000] people died from AIDS-related illnesses in 2019. 75.7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic (that we know of). 32.7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.

    #ChronicPain #PeripheralNeuropathy #BackPain #Headache #Migraine #COVID19 #covidlonghaul #Disability #MentalHealth #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #TheMighty #MightyTogether #MightyMinute

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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

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    Would you rather have magic powers or super speed & strength? Or something else? See the new article I just posted above w/ a great survey to answer

    This question was posed someplace else on The Mighty and got great answers with insight, reflection and many coming from a place of wanting or needing. I started saying I would want a great healthy and durable body and stable mental health ….but read somebody else’s response and realized if I had magic powers I could make myself cured of my mental health challenges and grant myself a great new body and then do even more… I got to thinking of what else I could do with magic powers…and thought big like I could eradicate all suffering and diseases and create empty hospitals and bored doctors and of course …World Peace and no war and all people would get along and respect each other… but then thought small like I myself would have no financial worries and with my stable health have a great job I can flourish in with my healthy body and mind…and be able to make more of a difference in the world.

    What would you do with magic powers? Or what else would you like to have (think big!)

    #MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicPain #ChronicIllness #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #HIVAIDS #longtermsurvivor #Fibromyalgia #IfYouFeelHopeless #Hope #DistractMe #TheMighty #MightyMinute #MightyTogether #mentalhealthwarrior #Addiction #AddictionRecovery #Cancer #ParkinsonsDisease #EssentialTremors

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    For You Who Ever You Are

    I don’t know who this for.
    #HIVAIDS #ChronicIllness #CheckInWithMe #MightyTogether

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    THANK YOU SO MUCH... WE HAVE REACHED 1,500 members … and counting! If you haven’t joined us yet we welcome you to join our community!

    Thank you for joining us as we support each other with our multiple health challenges! We appreciate you being a part of our community. This group was started with the intention of being a place where members can empathize with each other, find support and offer support to others. We love watching as this has been happening, but we think we can get even stronger! Please consider commenting or responding to other’s posts and responses even more. Even if it’s just a ❤️ or a 👍... or respond with a comment. This really helps us to feel supported and encourages people to post more.

    Thank you for joining us on our journey so far and we look forward to getting to know you all better in the future.

    Your Multiple Health Challenges Leaders! 💜❤️👍

    #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #ChronicDailyHeadache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #Cancer #IfYouFeelHopeless #Hope #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior #Grief #Headache
    #RareDisease #Asthma #Suicide #Trauma #DistractMe #CeliacDisease #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #ParkinsonsDisease #Autism #AlzheimersDisease #Dementia #BrainInjury

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    Ageless with HIV

    Sitting in a chair at the local clinic, I received a diagnosis of HIV in 2007. Having accepted and come terms with the fact I am HIV-positive, a new reality of living with this chronic condition after 15 years, is now in the forefront; and posing a new challenge for both doctors and patients, aging with HIV.

    This virus is becoming a double edge sword of sorts; in regards to long term treatment, medication side effects, and a continual immune system response to HIV, which leads to chronic body inflammation. As a result of the combination of these things, those of us living with HIV face the potential of new health issues and complications, to both our physical and mental well-being; due to non- AIDS related illnesses. These chronic conditions are seen in older adults and seniors, and are now being diagnosed in HIV patients under the age of 50.

    Why? New research shows that HIV causes age acceleration of the body; and most critically, of the organs. Whether one is newly diagnosed with HIV or has had this virus over a long period of time, aging has given rise to additional fears, anxieties, and uncertainties, aside from HIV itself; a “second acceptance” of this chronic condition, and a second opportunity to realize and witness to others, how courageous, strong, persevering, and amazing individuals we are; living our lives to the fullest.

    The challenges of comorbidity or multimorbidity; in combination with common and general issues experienced by those of us who are HIV-positive, (fatigue, sleep troubles, weight gain, etc.) can prove to be a long and rocky path to be walked. This being said, the progress and success achieved over the last 26 years in the advancement of treatment, has been absolutely amazing; and it is a blessing in disguise to have HIV if one is infected, at this time in history.

    Every person’s body makeup and chemistry varies among individuals; as genes, hereditary factors, medications taken, and the body’s response to HIV itself, are each a factor; and play their role in the overall health, quality of life, and life expectancy of those in our community. Upon my diagnosis of arteriosclerosis and then osteoporosis, it was a time for me to regroup mentally and emotionally, while continuing forward in my physical care; the best I could and still do. My aging with HIV hasn’t gone as I obviously expected, but HIV is a cunning, tricky, persistent, and unpredictable virus to have.

    I do sometimes think about my physical health as a whole in light of my turning just 44 years old, in the coming month; in regards to my quality of life and life expectancy. How will things be in five or ten years, taking into account the changes and adjustments I have already made due to my multimorbidity?

    In the end, my life continues to be a blessing. I will always have the present moment as long as I am still here. That is enough for me.

    #HIVAIDS

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    Things that could have broken you, things you’ve overcome, storms that you survived and pushed through …all made you stronger and a better person!

    So, you’ve been through hell and back… and are still here, stronger than ever! You’ve proved to yourself how capable and strong you are and how powerful and strong you can be. You don’t need to prove yourself to anyone else! Just find a way to dig deep and give yourself credit for being a survivor, and find a way to be proud of yourself and know you did more than enough with the cards you were dealt!

    You are a survivor, a warrior, you have kept putting one foot ahead of the other and doing the next right thing…that is not easy, not easy at all, and what others think based on what they can see is irrelevant. You should know yourself that you have nothing to prove to them. I hope you can step back and see what you’ve overcome and how strong you are. Please know you have done enough and you don’t owe anyone else an explanation or worry what they may think or say.

    #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #Headache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #IfYouFeelHopeless #Hope #relief #Joy #happy #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior

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    Life can be short, life can be fragile and fleeting, yet life is a blessing, and those whose lives are taken from us leave us memories that cannot die

    I just heard some difficult news. A dear friend who I know has been struggling fighting serious health problems just told me they have a limited time left to live. It has reminded me how precious life is, how beautiful life is, how short lives can be, how fleeting our good health can be and how unfair life can be. As loved ones become ill and their health diminishes those of us close to them can feel helpless and just wish there was something we could do to lessen their pain, to alleviate their suffering, to concoct some sort of magic potion, a panacea to bring them back to good health and lengthen their lives back to that we once thought they had left.

    But there is often nothing we can say that will help as much as we would like, despite our wanting to make a difference there is nothing we can do to change things and turn fate around, nothing we can offer to help alleviate their pain and suffering and nothing we can offer their family and friends to help cushion the blow.

    As I heard the news of my friend’s declining health I was deeply saddened. They are young and can appear so vibrant and healthy, so strong and spirited …but I have known the truth, known their days were numbered…however I thought they had years to live, instead they just told me it is months, even weeks or days.

    I just want to give them a big, deep, comforting, loving hug … but alas, life has them hours away. Life that is so fleeting for them has us separated by space that a hug can’t travel. It's just a virtual hug that I can offer. It’s a lot, but sadly I feel like it’s not enough.

    I can only send my love and support through words. Yet I know this can make a difference. I know from first hand experience that thoughts and prayers can travel through a phone call, cyberspace and through intention and belief…but it doesn’t feel like it’s enough. It just doesn’t seem fair. It seems like there is a void that cannot be filled.

    So I will keep them in my thoughts and prayers. Those words can seem hollow and often insignificant because they are shared so often that they don’t seem to mean enough anymore… but I will think about them a lot, I will pray for them, I will send my blessings that they don’t suffer, that they are not in pain, that they can enjoy every moment left in their life, that their joy and spirit will give them strength to live their remaining life to its fullest as much as they can.

    I will deeply mourn the loss of this friend, I will mourn the loss of a young life cut short, I will mourn someone I will not be able to hug… but I also know that they would want me to celebrate their life, celebrate the joy and exuberance they lived that life with, celebrate all the ways they touched others and made a difference in our lives. I will celebrate them, celebrate life … even if it can be short. I will celebrate their spirit and the memories that cannot be taken away. That part of their life is left with us all …forever!

    #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #Headache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #Cancer #IfYouFeelHopeless #Hope #relief #Joy #happy #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior #Grief #LossOfAParent #LossOfAChild #ChildLoss #Death #Mourning #sad #worry #Fear

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    Are you Dis-abled? Are you Handicapped? How do you see yourself? How do you think others see you? How do you wish they would see you?

    I often think about how I see my situation, how to label myself…am I handicapped? Am I disabled? and what the reality is. To be honest I often worry about how others see me too. It takes a lot to process my limitations and how much my life is affected by my plethora of health challenges…

    …on any given day: I may have my feet & legs burning in pain due to the Neuropathy I got from my first HIV drugs; I may need to be in the dark with no sound due to an unrelenting migraine; I may stumble putting on my clothes or fall getting up out of a sofa due to my balance problems; I may drop food on the floor from a shaking fork due to my essential tremors; I may not be able to hear someone unless they are close and facing me … even with my hearing aids on; I may only see blurry images and words without may glasses on; I may find it very uncomfortable to sit in a normal chair due to pain from my back problems; I may get lost searching for words numerous times in a discussion due to brainfog; I may have to refer back to get spelling of a word, going back and forth writing every syllable due to my memory problems; I may be deeply depressed or have exaggerated feelings in what I call my Bipolar Brain; I may get incredibly nervous before being around other people due to my anxiety; I may find myself feeling the pull of my addiction.

    Whether it’s one of my multiple physical health problems and/or one of mental health struggles, they are all just part of my daily challenges. So have I “earned” the ability to park in a handicap parking spot? What do I think? Does it bother me when people stare? I have learned I have to do whatever it takes to take care of myself. I have learned to not worry what other people think. It might be a day dealing with one of my “invisible illnesses” or things I am struggling with inside. I look just fine on the outside with what you can see. (except when I’m walking with my trekking poles so I don’t fall), I may be dealing with challenges that they can’t see, can't be seen, and things they can’t even be aware of.

    So it's hard for others to know what it's like for me to live with such challenges! Because I am embarrassed and hide them so nobody can know about them, nobody can judge me because of them … but then nobody can understand, nobody can love and support me. I hide them all alone and it’s a very heavy load to carry!

    ———————————————————

    I just spent a whole weekend with my friends on vacation. They were kind and concerned and often offered a hand or reached out to help me …but I declined…

    ,.. because I have got to practice. I have got to be able to get myself off the floor if I fall when I am home alone. But I think it is also because having them support or assist me means I am unable to take care of my challenges myself, unable to do so because I’m dis-abled! A tough label to own and accept!

    #MentalHealth #Disability #Depression #Anxiety #Migraines #COVID19 #BipolarDisorder #RareDisease #MightyTogether #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #ChronicPain #ChronicIllness #TheMighty #mighty #Selfcare #Selflove #IfYouFeelHopeless #Hope #PTSD #HIVAIDS #BackPain #Addiction #AddictionRecovery #MemoryLoss #ParkinsonsDisease #Tremors #balance #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #DistractMe #PeripheralNeuropathy

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    Broken

    I have hiv and I’m pregnant with my first child,boyfriend cheated on me, he hit me twice, I don’t have any money, I don’t really know if I have a job, he kept letting everyone fill his head up, why do I always stay loyal and never do anything, why did he cheat, I was with him throughout everything life threw at him, I knew him when he didn’t have money or a car, I trusted, I cared, I sacrifice, I cried, I love him so damn much but I get the end of the stick. I wanted to cut myself but I been stopped years ago and I was afraid when I saw the knife and I threw it. I love this child in my stomach but I feel like a terrible mom for trying to hurt myself or for stressing too much