Advertisement
The Body: The Complete HIV/AIDS Resource Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
HIV/AIDS Blog Central

Eight Characteristics of Long-Term Survivors of HIV/AIDS

By Terri Wilder, M.S.W.

July 6, 2009

Hey everybody. At the beginning of June I volunteered for THRIVE! -- a one-day educational and empowerment workshop in Atlanta for people living with HIV. I love doing this workshop and think that it is a valuable guide for people on living a long life with HIV.

At THRIVE! I do a workshop called "THRIVING with HIV." It is based on a 1987 research study conducted by Dr. George Solomon and Dr. Lydia Temoshok on how the mind and emotions impact the immune system. The purpose of their study was to understand how "long-term survivors" of HIV are different from people who follow the expected course of HIV disease. Through their research they were able to identify eight characteristics among long-term survivors of HIV.

The eight characteristics are:

  1. They are realistic and accept their diagnosis and do not take it as a death sentence.
  2. They have a fighting spirit and refuse to be helpless/hopeless.
  3. They have changed lifestyles.
  4. They are assertive and have the ability to get out of stressful and unproductive situations.
  5. They are tuned into their own psychological and physical needs -- and they take care of them.
  6. They are able to talk openly about their illness.
  7. They have a sense of personal responsibility for their health, and look at the treating health care provider as a collaborator.
  8. They are altruistically involved with other persons with HIV.

After presenting the workshop, I started thinking about my friends who have lived long with HIV. They are all unique long-term "thrivers" and I wondered if they had any of the characteristics that the researchers identified. I decided to sit down with a few of them and ask them, "Why do you think you have lived so long and well with HIV?" I talked with Chris, Eva, and George and was amazed at the similarities between their lives and the characteristics identified by the researchers.

I hope you enjoy this blog and are able to use the information as a springboard to not only create a quality life ... but a long life as well!

Peace,
Terri

To contact Terri L. Wilder, MSW, email her at twilder@thebody.com

Mark S. King provided video editing for this blog

See Also
More on the Mind-Body Connection

Reader Comments:

Comment by: Duncan (New York, NY) Wed., Jul. 3, 2013 at 8:25 pm EDT
Thank you for your beautiful blog. I am coming up on 30 years of living with HIV. I think something that would be very useful for the younger generation living with HIV, would be to do a study and media splurge involving older people's ideas, lifestyles and strengths. Let me know where I could be of any help. With love, D
Reply to this comment


Comment by: S. G. Brown Mon., Mar. 18, 2013 at 9:38 pm EDT
I saw 35 friends die of HIV-AIDS-At 72 years old,
I am an avid supporter.
Reply to this comment


Comment by: PJ (California) Mon., Jan. 24, 2011 at 12:00 am EST
Although these 8 characteristics seem logical, one must remember that this was not a rigorous epidemiological study, and as such, is unable to prove a cause & effect relationship. It is correlational and does not account for confounding variables. It could be that those who did not survive longer with HIV, were sicker at onset or had other concurrent health issues. And conversely, those that lived longer with HIV, could have had an easier disease course, were healthier, adherent to their med regime, etc.., which in general would have given them a better outlook on life, and be more well adjusted to their HIV status.
Reply to this comment


Comment by: OLORO J. (UGANDA) Sat., Aug. 14, 2010 at 11:33 am EDT
Truly as you have said Charles, only hard work will get us a cure for this disease. There is no disease in this world without a cure, nature provides us with those cure but only that it's hiden from us but one day GOD will reveal it to some one and every one shall be saved.
Reply to this comment


Comment by: Michael Cauthern (Albuquerque, NM) Sat., Mar. 27, 2010 at 12:14 am EDT
I've been living with this virus for over 25 yrs. I'm 54 and it's very true aobut the eight things that LTS have in common. Thank you
Michael
Reply to this comment


Comment by: David Patient (South Africa) Sat., Jan. 2, 2010 at 11:37 pm EST
Great stuff Terry. As a long termer myself [diagnosed in March 83 with GRIDS], I thought I'd add a link to a paper we wrote on this very issue so your readers can see what we've come up in the area of Psychoneuroimmunology [PNI] which we wrote about in our book on the subject called The Healer Inside you [Double Storey/Juta Press]
My partner Neil Orr is a research psychologist and PNI is his focus.
Here's the link and I'd welcome peoples comments and feedback.

http://www.davidpatient.com/mind-of-a-survivor

Keep up your great work Terry and hugs from Africa
Reply to this comment


Comment by: ray (south africa) Thu., Sep. 10, 2009 at 3:11 am EDT
Hi Terri God bless you as you do the work of Angels. I was diagnosed HIV + 1 month ago and must agree in part with Arnold of Montreal. Positivity and following a healthy lifestyle logically should prolong longivity in some individuals with strong bodily constitutions. However here in Africa politics, socio economic circumstance and general poverty and poor nutrition is sending currently 600 000 + South Africans yearly (and climbing) with the condition to their grave each year mostly on ARV program (of which many whom died from Kidney or Liver complications from ARV brew). The only permanent solution rests in God / a PERMANENT cure / vaccine for which sadly much needed funding and vigourous research is drying up globally. It is time we the HIV infected GLOBALLY, our families, friends, responsible human beings and governments unite under one common FUNDING umbrella and personally fund finding PERMANENT cures for HIV and the many other human diseases and plagues. Organisations like the United Nations again must stand up be counted and unite the nations and their peoples in common unity on matters of global interest. Personally i would observe that most recent plagues / diseases (like HIV / IBOLA / SWINE FLU / BIRD FLU) are biblical if not immediately dealt with and can be linked directly to climate change. If we as humans do not get our act together and start dealing with PERMANENT POSITIVE RESOLVE on many global issues then we are going leaving bleak future for our dear children.
TERRI - honestly we need a lot more Angels like you out there especially ones with power at President Obama / Bill Gates level whom can change the way mankind think.
Reply to this comment


Comment by: thokozile (gauteng,SA) Thu., Aug. 13, 2009 at 12:12 pm EDT
thanx for the blog & i always thank the mighty God for each & every day of my life.ive been hiv+ for eleven years,have a 6yrs old daughtderwho is hiv-,on med for a year.i do try some of the principles but i can't disclose even to my sister & she disclosed to me.i do want her to know but i can't.my emotions are escalating,sometimes i even forget that i am +.the other thing can you advise me on how to gain some xtra kilos i weigh 50kg(36yrs female)
Reply to this comment


Comment by: Terri (NYC) Fri., Aug. 7, 2009 at 6:13 pm EDT
It is not a "list." They are characteristics that were identified when two researchers investigated long term survival in people with HIV in a research study. Maybe folks should read the orignial journal article...
Reply to this comment


Comment by: Mark (Pittsburgh) Fri., Aug. 7, 2009 at 11:54 am EDT
I agree w/Arnold. Having been positive since 87 and watching most/all members of my support group pass away means I've given this question a lot of thought as well. My answer? It's pure dumb luck. If I don't live long does that mean I didn't do any of those things? That list holds about as much meaning as a monthly horoscope. It can apply to anyone or nobody. But when it starts sounding like a guilt trip I have to object.
Reply to this comment


Comment by: Drasy (South Africa) Mon., Aug. 3, 2009 at 8:37 am EDT
Terry thank you very much for putting together the 8 Characteristics. I tested HIV + in 6 months ago, I can assure you like the other HIV'ers, my life has changed. I eat health, exercise and on meds. When I was diagnosed six months ago my CD4 was 7, doctors assured me I was going to be ok. I was very sick hospitilised with pneumonmia. I pray and I believe in God and he healed me my CD4 is now on 100. Being HIV+ is not the end of world. My Husband is very loving and supportive. I am greatful that God is now playing a big part in my life. Hiv really turns life for the best.
Reply to this comment


Comment by: Charles (Fort Myers, Fl) Fri., Jul. 31, 2009 at 7:18 pm EDT
Thanks for your article, I can atest that what you have written is the truth..Having have hiv since 1987..I'm still here...healthy as a horse...CD4 700, viral load undetectable...it pays to stick it out... the drugs side effects are very overwhelming but time and patience is key...don't give up and ride it out...as they say...this too shall pass...20 plus yrs and counting..I'm now 47. Back then, there were no options...no medical improvements and no hope...Once you accept what can't be changed and move on, the better it gets....Thanks again
Reply to this comment


Comment by: Ricardo (Belo Horizonte, Brazil) Thu., Jul. 30, 2009 at 5:40 pm EDT
That's a great video! It was so good to see how those people have been dealing with the HIV and how brave they are! i was particulary impacted by the woman, who, beyond the HIV, went through 3 cancers and still has a good welfare nowadays!
besides the testimonal, i also agreed 100% with the eight characteristics and i'll try to keep them in mind!
thanks for the video!
Reply to this comment


Comment by: Jon (Birmingham, United Kingdom) Tue., Jul. 28, 2009 at 7:44 am EDT
Hello all. It's very sublime to read so many positive and uplifting stories, especially from people who have been living with HIV for 20+ years, for me as I am sure for many others it provides so much encouragement for our futures.

Happy days and lots of love, Jon.
Reply to this comment


Comment by: River (Italy) Sat., Jul. 25, 2009 at 9:13 am EDT
This blog is very interesting and although I haven't been positive for probably more than 4 years I recognize myself in those charactheristics.
HIV is part of my life but it's not driving my existence. My dreams, goals, ambitions, loves are still driving my lifestyle and that will never change. HIV has just made me into a better person, more mature, caring and stronger. I'm not taking any medications and hopefully won't have to for a long time.
Sometimes I think we should just stop seeing ourselves as a very separate category. HIV is not the worst thing that can happen to you today in terms of health issue. Of course we have to keep up fights and prevention and be responsible but I think we should stop looking at ourselves as poor "victims". I feel privileged to have learned so much about myself and life "thanks" to the infection. I feel privileged I have a better understanding of what is important in life thanks to the infection. I feel privileged I am a better person a better friend and a better lover thanks to the infection. I feel privileged I am infected with a disease that science is helping us keeping under control and that most probably won't be the cause of my death! I've lost friends and family to illnesses that they had no chance, no possibility to fight against. They were just there waiting for "it" to happen or hoping for a miracle.
If you look closer the glass is half full, not half empty and our goal is to fill it up! Never give up!
Love. F
Reply to this comment


Comment by: vik (Nairobi) Sat., Jul. 25, 2009 at 5:29 am EDT
Thanks Terri for the article and to everyone else for their input....i read articles on the body.com regularly...but have never written or contributed anything...i always wish to have someone to communicate with but am afraid of disclosure and rejection...i do not know what to say about characteritics of long term survivors...i have been positive since 2001 (when diagnosed) but cannot tell when i was infected. I am not on meds and my viral load has been undetectable and my CD4 over 1000. I do not fit with some of the eight characteristics but identify with most of them. I have not disclosed to any one except my doctor and my current boyfriend. Except the two i do not discuss about my status. However i always read the latest from the body.com and am so grateful for that. I consider myself lucky but have also changed lifestyle...i hope to keep my counts as they are...i take aloe vera supplements religiously..i do believe that they have had an impact on my good health and will continue taking them. I believe that each of us has a story which is a combination of many factors i.e. fate, luck, genes, faith, etc, etc and whereas we can influence others some we can never quite control and even as strong as we feel we never can tell what tomorrow will hold....good luck and best wishes to all.....Vik
Reply to this comment


Comment by: Jewell Terrell (Richmond, Virgnia) Wed., Jul. 22, 2009 at 4:22 pm EDT
I have personally had three people close to me with HIV/AIDS. The one willing to do what it takes to stay healthy has been living with his HIV+ status for about 20 years. My sister lived with it for 10 years before AIDS took her. I have a friend who only lasted about 2 1/2 years because he wanted to go out "in a blaze of glory" and partied until he was at death's door. I really believe that you have to want to survive this disease. If you let it take over and give up your odds aren't that good, from what i've witnessed.
Reply to this comment


Comment by: maria t (massachusetts) Mon., Jul. 20, 2009 at 10:17 pm EDT
i just lost my mom a month ago to aids.she was diagnosed in 1983 the year i was born i am negative.but my mother was never on meds or regimens of anything.she was just strong i guess.the virus for at least 26 years thats crazy.when told in 83 when she was 17 that she wouldnt make it to 25 and she passed all those numbers 44 she made it.with a fight.....
Reply to this comment


Comment by: Al (Great Lakes) Thu., Jul. 16, 2009 at 4:50 pm EDT
I found out I was HIV 2 months ago. At first, I was in shock and embarrassed cause I knew better. I also had the hard task of telling the guy I just started dating who, along with one other also turned out to be positive. (All of us were being irresponsible in our lives.) I felt like a monster.
But as time went on (two months seems like two years now) and we were able to talk to each other (neither of them blame me) it made the news much easier.

Here's the funny thing. I am happier now than I have been in 10 years. The poz diagnosis slapped a whole lot of sense into me. I realized that I hadn't been happy. I hated my life and was covering it with casual sex and a whole lot of pot smoking.

Life all around in general is better, from my attitude, to my friendships, to, wonder of wonders, the guy I had just started seeing is still with me (talk about a rough beginning) and he is a perfect match.

So I can't say it's been all bad. Do I worry about surviving? Who knows when the clock will toll for any of us. I'm just going to eat right, stay fit and enjoy what I have.
Reply to this comment


Comment by: Marie Brandt (Portland, OR) Mon., Jul. 13, 2009 at 10:55 am EDT
Living in Argentina for 3 months, back in August. Anyway I am a supporter of the HIV/AIDS community and want to help. I was thinking your question about what sets apart some HIV positive people and keeps them healthy. PHR's should help this community to track their med's and get medication reminders. I hope this community will get on board with PHR's and the features that this technology can do to help them stay healthy.
One product that an friend of mine who is HIV positive in Portland uses is motionPHR and he says that it is very helpful to him. You can look it up on the internet.

I am interested to hear if you think that this type of product would be a factor in wellness and prevention for the hiv/aids community to keep them healthier.

Reply to this comment


Comment by: Dorah (South Africa) Mon., Jul. 13, 2009 at 1:54 am EDT
When i saw the characters of long term survivors,i felt i had to read them and see whether i am still on the right track....i must say i am very glad.The only thing missing is talking openly about my status.i do talk to my boyfriend,parents and doctor only.Oh by the way also have online friends that i talk to,we have become very close and yet we have not met and may never meet.I have been HIV+ for nine years.Keep it up Terry.
Reply to this comment


Comment by: Oloro Joseph (UGANDA) Sun., Jul. 12, 2009 at 8:43 am EDT
Please allow me first to thank the body for the kind of infomatipon I do always get from their service. congratulation.
I am not an HIV positive person but as a teacher, I always look for the best information to give to my students about HIV so that they become of great help in the fight against HIV/AIDS when they are out of school.Iam a clinical officer by profession and now just finished my BSc in Pharmacology and my class mates have always wondered why I do love things to do with HIV and I have been teaching pharmacology to every class of diploma in clinical medicine students and my favourite topic has always been on antiviral agents. Actually I do agree with these eigth characteristics of long term servivers of HIV which you have presented and that is exactly what every HIV/AIDS sufferer needs to develope so as to live long and above all the need to care for the uninfected by not transmitting the disease further. why?
HIV cure is yet a dream but prevention and even eradication can be possible if;
People remains faithful
Practices abstinence, including priests and nuns.
Badly behaved positive people avoid infecting others intentionally.
Every one gets to know their status and strive to keep what they have or shall get.
May God bless us all if gain our insight and work for the bettermen of man kind by ndoing what is right.
Reply to this comment


Comment by: Jalila (New York) Sat., Jul. 11, 2009 at 10:48 pm EDT
I doubt if you or people like you know what makes a long term survivor. For one what do you consider long term survival. A fifteen yearer who never took any antivirals or acknowledged that he was HIV positive (my husband). A fifteen yearer who acknowledge she was HIV positive used drugs crack and was positive for those years, was told by doctors she was a long term survivor and they wanted to conduct research on her (my sister). Two known drug addicts who are alive after twenty years and taking antivirals (my brother and his wife)or me HIV positive since 2001, infected by my husband, no meds still alive and well.
Reply to this comment


Comment by: Jalila (New York) Sat., Jul. 11, 2009 at 10:41 pm EDT
I doubt if you or people like you know what makes a long term survivor. For one what do you consider long term survival. A fifteen yearer who never took any antivirals or acknowledged that he was HIV positive (my husband). A fifteen yearer who acknowledge she was HIV positive used drugs crack and was positive for those years, was told by doctors she was a long term survivor and they wanted to conduct research on her (my sister). Two known drug addicts who are alive after twenty years and taking antivirals (my brother and his wife)or me HIV positive since 2001, infected by my husband, no meds still alive and well.
Reply to this comment


Comment by: Michael (Manchester - England) Fri., Jul. 10, 2009 at 4:23 pm EDT
Hello everyone and Terri:

After reading your blog and other comments -- I too have mixed feelings about how we express ourselves living with HIV. Some people living with HIV claim to be victims and others survivors. So it's even the positive groups that often demand more than they should. I'm fast approaching 26 years living with HIV and have never been offered or taken HIV meds. So I feel and I can only express my feelings there are several parts to being HIV positive. The first part is those newly diagnosed due to their own ignorance when sexual health and HIV information has been around for so many years. It is also those people that think we the long-term survivors who fought from the rights and privileges that people like myself past and present (passed away) now make more and more demands on services, treatment, and care. Then there's the group of individuals that have lived with HIV for more that 10 years, still often fighting alone cause no one will listen to them emphasizing prevention, treatment and care. And then there's my group -- yes the long-term non-progressor positive people now dismissed in any function of decision making processes.

So now let me say - I am still as angry having this disease, but it's also that anger that keeps me alive. Alive and kicking - kicking at those people in "our industry" - yes the HIV industry. Still wanting to treat us like victims. Admittedly, the points that Terri makes are good ones, but there is still more we need to learn and we need to learn together instead of different groups, different cultures and different lifestyles staying separate we need to unite our cause and continue the fight for - yes, better treatment, better care and better prevention messages and even more sexual health messages to people living with HIV. As it is fast becoming more and more apparent that HIV is not the only illness and disease people living with HIV have to face "Dual Diagnosis" - Hep B & C, Syphilis and other STIs. M
Reply to this comment


Comment by: daniel (san Francisco) Fri., Jul. 10, 2009 at 3:08 pm EDT
I was diagnosed in 2001 I was scared but when I started to accept my disease and let my beloved ones my new health condition i started to feel better. now i take my meds and ah live a normal life. i would like to have kids and i doh kno. i help at my health center and do acomplishment to those who are abbandoned by their families. and those hiv + who lives in a homeless situation. its great when one can be useful to others. i love mih people and ah always let them kno that they in dying but living with hiv. love this blog and the article, keep up. is a trini ( trinidad and tobago) thatīs the reason of mih misspelling:)
Reply to this comment


Comment by: Steve (Chicago) Fri., Jul. 10, 2009 at 2:44 pm EDT
I became a secular Franciscan and turned to Christ and St. Francis (who also suffered from Cholera for many many months as a young man). Dx'd w/ StageIVd (final stage, there isn't a StageV, or StageIVe) cent. nervous syst. non-Hodgkin's lymphoma in my brain, spine, and just about everywhere else.... 4 oncologists wouldn't treat me because I'd never stand the aggressive chemo.... then was diagnosed with HIV, really endstage AIDS, cd4: 2 (I could name 'em all) 2 days after cancer Dx.... was also superinfected with HepB and C, plus malaria. I'm still here and pretty much back to my old self. Don't laugh at miracles. what got me through was uniting my suffering to Christ's.
Reply to this comment


Comment by: Y.G. (Queens, New York) Fri., Jul. 10, 2009 at 1:19 pm EDT
It does not matter if you believe in God or not, subscribe to one, all eight or none of the principles. You can't acquire these characteristics no matter how much you read about it. You can't for example become unstubborn after you get infected. Be yourself! Only one characteristic matters: current medications! Take your meds, cope with side effects (the winning strategy is not to take full doze of any meds once you reach the undetectable level), regularly read The Body's articles in "Ask the Expert" section) and go on living a normal life! Terri's good-intenioned article is just a sociological artifice for the uninfected!
Reply to this comment


Comment by: TW (earth) Fri., Jul. 10, 2009 at 12:52 pm EDT
I don't think anyone is trying to "blame" anyone for not living long. Look at the blog as food for thought. The original study was conducted by two credible researchers and reports findings that could be useful in creating a modern treatment plan that not only includes ARV treatment but psychosocial recommendations as well. Dr. George Solomon was an M.D. who was a pioneer in establishing the links between the mind, brain, and immunity. He is widely considered one of the key founding fathers of this scientific field. Dr. Temoshok has a Ph.D. She is the Principal Investigator of a 5-year NIH-funded study (through October 2009), Elucidating the Biopsychosocial Mediators of HIV Progression. This study builds upon her extensive prior work as an international leader in the field known as psychoneuroimmunology (PNI), which explores the multiple complex interrelationships among the mind, the central nervous system, the immune system, and the outcome of immunologically mediated diseases.
Reply to this comment


Comment by: CDLM (Atlanta GA) Fri., Jul. 10, 2009 at 10:03 am EDT
I have been living with HIV Disease since 1986. Since that time I have always made an effort to be well informed and in charge of my own health care. I have always been a partner with my health care provider and not a patient. Friends, family, and professionals taught me that that eating right, getting enough rest, and yes exercising (I used to say if I had an aerobic thought I would lay down till it passed, not anymore) all help. These are simple lessons but often hard to follow without peer support. I have made positive choices in my life to reduce stress, pursue important life goals, and share my journey with people who love me. The principals outlined in this article based on psychoneuroimmunologic influences have been validated through over 15 years of follow up research looking at factors like CD4 and CD8 counts and ratios, Interleukin-6 (IL-6) levels, Macrophage Inflammatory Protein(MIP) response, viral load response, and the autonomic nerve, hypothalamic-pituitary-adrenal axis, and cardiovascular response to immune system internal/external stressors (solid science with large scale studies). Although the interviews report anecdotal evidence, they are speaking to real factors that do influence outcomes. Sometime in a world where we can go and get a once a day pill to treat HIV disease it is easy to write off factors like positive attitude and altruistic outreach but that does not make those factors any less valid. I do not dishonor the memory of any of the literally hundreds of friends I have lost over the years by acknowledging what has worked for me and I am offended by the inference that my statements do. Finally, I learned all of this from those who came before me. From the generosity of spirit of other brave men and women who freely shared what they had learned so I too could thrive. I continue to choose to do the same for others and ultimately I think this is the greatest factor in my success and I stand behind all the statements made in my interview.
Reply to this comment


Comment by: Michael (Pittsburgh, PA) Fri., Jul. 10, 2009 at 9:21 am EDT
In Pittsburgh some years ago we also conducted an informal survey at our long-term survivor's group session. One over-arching theme was a life based in SPIRITUALITY - the belief in GOD or a greater being than ourselves. It all gave us hope to remain to care for others and ourselves and share our stories. We had hoped to use it as a springboard to act as mentors in helping the next generation to find hope for living and to know that they too can survive the rough times. I am a 24 year survivor and we are honored to have one of the longest living survivors (believed to be 29 years) as our leading hope for survival. Thank you for THRIVING with HIV!
Reply to this comment


Comment by: Linda (South Africa) Fri., Jul. 10, 2009 at 3:44 am EDT
Best ever article I read. I am also a RN at a University working with students every day. This article inspire me more to deal with the young people to be more positive in life. To all of you I just want to say HIV is just like any other disease and needs to be treated. Just like diabetes, if you don't get treated and life according to your disease you will die. May God bless you all.
Reply to this comment


Comment by: Carrie (Seattle, WA) Thu., Jul. 9, 2009 at 11:28 pm EDT
I am a 51-yr. old woman, recently diagnosed with AIDS. My CD4 was at 161, and my viral load at 660,000! I started ART right away and I'm feeling better. It can never hurt to have a positive attitude about anything in life. Having HIV so far has been depressing. Dealing with the attitudes of people, the stress of trying to adjust and make changes is difficult, but the situation must call for a change in attitude because life is the one thing we all have in common, the one thing that is a given. Not one of us knows how long we will survive. That is not our call to make. Taking care of oneself, being as optimistic as you can while allowing yourself to have down times is healthy. Eating well, getting some form of exercise and choosing who you associate with is also something you should do because you deserve it. It isn't fair to those who have died of HIV disease to assume that because of their negativity and choices that that is why they are not here. HIV/AIDS is a very serious disease, and without knowing all the existing factors of a person's personal life, it is really hard to say why they didn't "thrive". Look at a person with cancer. Some survive, as to where others with the same treatment don't. And there is still a mystery as to why. Genetics do play a role in a person's disposition and this could very well explain the differences of long-term survivors vs. non. Think about how some have good emotional support and some don't. Feeling like your alone while bearing the burden of a disease like this in itself is a lot for anyone to have to do. Some are homeless, some have no health coverage, some don't even know they have it until it is in the later stages (like me). I just know that it is nothing to be ashamed of and it is time for the stigma to be replaced with compassion and understanding. So it is a matter of personal choice and responsibility to help you do what you can to live a healthier and better quality of life no matter where you may be at with it.
Reply to this comment


Comment by: AJ (St.Pete, Fl) Thu., Jul. 9, 2009 at 6:02 pm EDT
Very good article!!! I will be a 20 yr survivor in November. I believe in all of these points. I have survived by not allowing the virus to get control of my life. If you give it an inch, it will take a yard. Once it gains control of any aspect of your life it WILL take control.

I have never changed my beliefs, lifestyle or thought process BECAUSE OF the virus. I did it because I wanted to.

After 20 yrs I'm undetectable w/ cd4 of 650, had dropped to under 200 in 1995 and 110 in 2000.
Reply to this comment


Comment by: Phil (Panama City,Fl) Thu., Jul. 9, 2009 at 5:02 pm EDT
i have been positive for 21 years and I have always tried to remain very pro active to my health situation. I lost my life partner early in the 90's, and I said then I would try to live as normal a life as I could. Now in my 60's I am dealing with health issues not related to HIV and things have changed some. i still intend on living a long and fruitful life. God Bless you all.
Reply to this comment


Comment by: Doug (Huntsville AL) Thu., Jul. 9, 2009 at 1:22 pm EDT
I knew I would read this article and sigh. I am such a stressed out dude. This information was a wake up call for me. In order to survive I have to think positive. I like being reminded of that although I am hard headed.
Reply to this comment


Comment by: Kirk (Dallas,TX) Thu., Jul. 9, 2009 at 12:48 pm EDT
Terri, it was a great article and I appreciate you for bringing these longtime principles and/or reminders to the HIV community. I have been HIV+ for 4 years now and I am already doing most of the eight things. I am not on HIV meds because my T cells are over 550 and viral load is very low. I do see my doctor 3 or 4 times a year minimally. Anyway, I understand that the principles are not guarantees to a long-life but they sure will help in the quality life that I have to live. I am not sure if length is the goal if it is without happiness but happiness and joy is the goal and if length of years come along with it, then I am thankful. Many blessings be yours and your beautiful guests who spoke. I love them for their courage and many others on here. Please keep doing what you are doing because you are making a difference. Keep smiling. lol
Reply to this comment


Comment by: TW Thu., Jul. 9, 2009 at 11:03 am EDT
I think some folks are mis-reading/watching the blog (or maybe reading too much into it.)No one is trying to insult people who died.We have all lost people to this disease and it is painful and often confusing when it happens. The blog is not promoting "pseudo-science" or a "heal thyself" philosophy. Actually, the blog is in alignment with alot of the recommendation found in the Denver Principles. That document was written in the 1980's and I don't think it is irrelevant either. I don't think the blog is "promoting" anything. It is an informational blog nothing more, nothing less. The blog is simply looking at the 8 characteristics found during a study conducted by two docs in the 1980's....and asking if these characterisitcs are still relevant or not. Maybe they are and maybe they aren't....it is simply asking the question.
Reply to this comment


Comment by: JMinOHIO (Cincinnati, OH) Thu., Jul. 9, 2009 at 10:15 am EDT
I don't think Terri is saying that these are the ONLY things that have helped long-term survivors but that these are the PRIMARY COMMON TRAITS that she found. As a long-term survivor and someone who has had many friends/acquaintances affected and someone who has volunteered for HIV/AIDS organizations, I would say her analysis is right on . . . very accurate. I found my myself nodding in agreement as I looked at this.
Reply to this comment


Comment by: Dave (Houston) Thu., Jul. 9, 2009 at 9:21 am EDT
Certainly adopting any of these characteristics would help support existing strategies like taking your meds regularly and maintaining a good overall attitude about HIV and your life in general. What wasn't addressed was personal spirituality at whatever level/involvement you choose part of which I contribute to my 25+ years of being asymtomatic.

And I also have to agree that genes and whatever other psysiological aspects of my body that allow the meds to work play a large part of my long term health.

There is no one silver bullet that can be said is the defining characteristic that keeps us thrivers healthy but I feel it's the combination of physical, emotional and spiritual attributes that one adopts that gives us the best chance to live a normal lifespan.
Reply to this comment


Comment by: Joey (San Francisco) Thu., Jul. 9, 2009 at 9:02 am EDT
I totally agree with Arnold. This is nonsense. While clearly you need to be extremely careful about taking your meds on time every time, love yourself and have a positive attitude, the people who survived the early years of HIV had a lot more going for them them. Perhaps it was genes, perhaps it was the virulence of the virus they got, perhaps it was something else unknown at work. I also know HIV positive people who were too busy using drugs to take care of themselves. They too managed to survive till HAART came about. SO even with their crappy attitude they survived, while many many others died. I think as someone living with HIV, you have to do your best to survive, but bad things happen to good people who try hard! You cannot blame yourself if you get sick! And this is truly an insult to those who died.
Reply to this comment


Comment by: Sergio (Brazil) Thu., Jul. 9, 2009 at 8:14 am EDT
I was infected in 1991 and diagnosed in 1994. In 2001 I started HAART therapy. I am in a good shape and have productive life as a professor of an important university in my country. I have a wife and a three year old daughter both clean of the virus. Due to my professional choice, I do not disclose my positive status to anyone, but my wife and just some friends. For the same reason I am not altruistically involved with other persons with HIV, since I live in a small town and prejudice is still a rule. So, I do not fulfill two of your eight requirements to be a succesful long-term survivor of HIV. I think you should be careful with your statements, since there is no general rule to succesfully beat this disease. I wish you the best.
Reply to this comment


Comment by: Chris (Hong Kong) Thu., Jul. 9, 2009 at 7:20 am EDT
I entirely agree with Arnold. While some of the things described can certainly be beneficial, this smacks too much of pseudo-science: several of these characteristics are open to subjective interpretation and cannot be properly measured. I am equally convinced that many people who follow these guidelines do not fare as well, and the implied message is that they did something wrong. We all like simple explanations but sometimes reality is a bit more complex than that. I am convinced many factors involved in long-term survival are not yet properly understood. I think if they were, we'd be much closer to a cure.
Reply to this comment


Comment by: Simon (London) Thu., Jul. 9, 2009 at 6:27 am EDT
Agree with Arnold.

This article is based on ideas from 1987 before there was effective treatment. Survival before then was based on luck and genes. Too many people fought HIV with all they had and still died.

For 95% people, treatment is what will make the difference between as few health years and a more normal natural lifespan.
Reply to this comment


Comment by: Kim Washing ton (Tampa, FL) Thu., Jul. 9, 2009 at 6:17 am EDT
Hi all. I totally agree with this subject. Some things are beyond our controll, but why not develop a positive outlook just in case it is part of the healing process. I am a working RN. There is a consistant difference in overall healthy outcomes when comparing people who take responsibility for their health and people who are dependent on the medical machine. Your words inspire me to do more teaching. Thank you
Reply to this comment


Comment by: tcocoa (sc) Thu., Jul. 9, 2009 at 3:53 am EDT
living 13 years(asymptomatic) with this disease is a challenge! I found out while pregnant with my last child who is negative:) I try to just live life to the fullest and take my meds on time, also try and prevent myself from getting too rundown. I see my doctor once or twice a year. Every day is a blessing because I didn't think I would live to become a first time grandmother or to say I have been married 16 years or to have two very grown children, but because of my creator I'm still here and have buried a lot of my family members and have a lot of friends who are battling cancer, MS and so forth. I am blessed!!!
Reply to this comment


Comment by: Charles (Nairobi) Thu., Jul. 9, 2009 at 3:32 am EDT
It has been five years since I knew of my HIV status. I can only guess that I have lived with it for ten years since I recollect having unexplained skin ailments, drastic loss of weight etc around then. But I cannot explain why I am not on ARVs nor septrins or any other drugs at all ever since. I cannot explain that I have the most healthy looks, gym fitness and a great positive life. I am not a member of any HIV group. My CD4 has remained above 600 since I discovered I was HIV+. I can only thank God.

Yes I eat balanced food, exercise once in a while but I cannot tell when it will strike, if it ever does. All I can say is live positively and eat well and happy when you can.

Let us work hard as a human race to find a cure in our lifetime.
Reply to this comment


Comment by: Edward Seah (Singapore) Thu., Jul. 9, 2009 at 3:13 am EDT
Nice. I have been reading Dr. Bob's forum and well as a few of your blog entries, as well as a book called 'Politics of Prevention', and it is true that though the disease is deadly, it is prejudices that can cause premature death. All these have taught me not to take the virus lightly, but on the other hand know that people who are diagnosed positive are still human who needs all the love and grace any human is entitled to. That, and respect. Eva's last tale was entertaining. Great work.
Reply to this comment


Comment by: Ntsoaki Molotsane (South Africa,Johannesburg) Thu., Jul. 9, 2009 at 2:28 am EDT
I trully agree with all the above points.I am surviving on them.I didnt see my diagnosis as a death sentence,and I talk openly about my status,that really helps a lot.Society is changing people are no longer as judgemental as they were previosly.
Reply to this comment


Comment by: raymond Hilerio (NYC) Wed., Jul. 8, 2009 at 11:28 pm EDT
I have always felt that I have managed to live with this virus is because of my genes. I don't remember my father ever being sick and the same for my mother. I am also the kind of person that does not give up on anything. I refuse to give up. I also take my meds. on time every time.
Reply to this comment


Comment by: Paul (Medford, OR) Wed., Jul. 8, 2009 at 11:01 pm EDT
I love this!!! I have been living with HIV for 14 years that I know of. Hearing how the doctors, mentioned above, have isolated 8 characteristics has only empowered me more to continue to strive (thrive) for the better things in life. Exercising, eating a balanced diet, surrounding myself with great people, and accomplishing goals have all been a contributing factor in my success. I hope the word about THRIVE reaches every care provider and person living with HIV. I would love to get a THRIVE seminar in my area to help others.
Reply to this comment


Comment by: Arnold (Montreal) Wed., Jul. 8, 2009 at 9:51 pm EDT
As a "mid-term" HIV survivor -- close to 20 years now -- I have mixed feelings about your message.

I agree that dealing with our HIV status in an open and straightforward manner will help us to seek care, to make well-informed treatment choices, and to keep a good quality of life. I have nothing against empowering (fellow) HIV'ers to deal with their HIV status, allowing us take charge of our health.

However, I am against the "pseudo-science" that is being promoted here at the same time. I am against the false promise of the "heal thyself" message -- a message which is not new at all, and that has been around for as long as there have been people dying. I am against the "implied responsibility"...

During my HIV-surviving career I have seen many friends in equally good health -- sometimes even in much better health -- slip away. Poof, gone!

Am I to understand that they died since they "failed" to look after themselves? Do you want me to believe that I am still alive -- and many of my friends are now dead -- because I take better care of myself, or I am more at ease with my HIV status? Frankly, I am not so sure...

If you ask me: a bug is a bug is a bug. Sometimes it kills quickly, sometimes it kills slowly.

No matter how many times you turn it around, it's still a bug, evolving and adapting quickly to our genetic make-up and other "host factors". For all I know, it is still only partly understood by the best medical scientists.

I agree that empowering HIV'ers to take care of their health is an excellent idea. The 8 characteristics you describe are great guidelines to live a relatively good and happy life, despite the major setback of HIV.

However, I find it an insult to the memory of all those who are already gone, to consider this list of 8 characteristics as "the key to survival", even if it is my own survival.
Reply to this comment


Comment by: Danny W Holt (Birmingham AL) Wed., Jul. 8, 2009 at 8:37 pm EDT
Glad to see you're doing this Terr.y I just turned 17 years the 17th of june and was told that I could go die know when they told me at the health department in 92 and the nurse walked out of the room and left me by myself without getting anyone to come in and talk to me. But I'm still here and I seen to it she lost her job. And I'm only own one pill and see the doc every six months for me I think keeping stress away and and exercize and eating right and taking your meds plays a big role for me and all the programs I'm involved in keeps me going. Danny
Reply to this comment


Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)

Your Name:


Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining:
BLOG:
Working in the Frontlines of the HIV Pandemic Since 1989


Terri Wilder is a social worker who has worked in HIV for nearly two decades. She has written numerous articles about HIV, and has presented at HIV conferences around the United States. She is currently pursuing a doctoral degree in sociology at Georgia State University.


More About Terri:
Profile


Subscribe to Terri's Blog:

Subscribe by RSSBy RSS ?

Subscribe by Email


Recent Posts:


Articles by Terri:

Are We Thinking About HIV and Older Adults?

Twenty-Seven Years of Women Living With HIV: Past, Present and Future (January 1, 2008)
To read PDF, click here

The Hidden Epidemic: White Women and HIV (September 2001)
From AIDS Survival Project

For the rest of Terri's articles, click here.


A Brief Disclaimer:

The opinions expressed by TheBody.com's bloggers are entirely their own, and do not necessarily reflect the views of TheBody.com itself.

Advertisement