Aging with HIV

Submitted on Jun 6, 2011 by  celina5000

                        "And forget not that the earth delights to feel your bare feet and the winds long to play with your hair."  Kahlil Gibran

In our society we tend to push our senior citizens aside.  We forget that they still have a lot to offer.

It's called AGEISM. I haven't written a blog for a while now; due to a stubborn infection that required numerous doses of  antibiotic and its effects to get it under control.  Furthermore I was finding it difficult  to find a topic  to write about.  I was feeling more isolated than usual, and more depressed as well.

Then one day, I found an article in a newsletter called  entitled : What's so Hard About Living With AIDS When You're Over 50?  My spirits were immediately lifted.  I'm 53, and have lived with "the little bugger" for 27 years.  I don't hear or see a lot of information or images in the media about the over 50  HIV crowd.  The most visible figure we see is Magic Johnson.  His fame tends to glamorize HIV, as he has the financial and social means to be applauded everywhere he goes.  Though he does provide a positive boost to the stigma of AIDS in a way that most us can't; hence his contribution is most welcome.

Living over 50 with HIV is no longer unique, 1/3 of people who have HIV (in  North America)  are 50 years old or older.  This figure will grow to 1\2 by 2015; due to improved treatments.  On the other hand it is discouraging that the numbers are growing.

I have to say that this was news to me.  I tended to feel even more isolated than most because I'd been around so long and I didn't seem to fit the more youthful model of someone with HIV that is often portrayed in the media etc.  Now I feel I belong to a group; a group that experiences life much the way I do.

The realities of growing older with HIV are not always positive.  We get to deal  longer with the stigmatization, the medications and the regular aging challenges.  Older people are often not as educated about HIV, tend to have low self-esteem; are more isolated, feel less useful.  Much of the information that is put out there is geared toward the younger generation.

When we consider that older adults will be the majority of people with HIV in the next decade;  are we ready to meet those needs?  I mean when I was diagnosed, my doctor plainly told me I had 5 years to live.  It is a popular saying that you should live as though each day were your last.  I could write a book about the ridiculous decisions.

I've made with the idea that I might die tomorrow.  I've run up my credit cards so many times it's absurd.

Who would have thought that people with HIV would  live long lives?   We need to change that thinking.  I need to change that thinking for myself.

This is what ageism means.  The medical system has to accept the fact that HIV has a place in the whole bag of illnesses that come with aging.

But who will care for them?  Like myself, most 50+ live alone, their families have  grown and moved away.  They don't receive enough emotional support, or practical support with daily chores.  For example, I still haven't  had a home-care person come to my home, to assist me with housekeeping and laundry.  Vacuuming is a workout, leaving me with little energy to do the things I enjoy, like painting or even visiting with friends.  I have fallen a number of times due to my poor balance.  When I think of the energy I used to have 10 years ago, teaching, driving, preparing meals for 3 children, maintaining my where are all the caregivers for older adults living with HIV?

My poor doctor, who is lovely and sympathetic in every way, doesn't seem to know what to do with me.  He keeps me pain-free, bless him.  I get a nursing visit once a week, and as long as I'm vertical , it would seem that things are good.

But things aren't good.  I live in an assisted-living senior's complex (though I'm not officially a senior till age 55),  it's the best the medical system can do right now.  Of course, even to me, this just sounds like a lot of complaining;  I don't have a lot in common with the much older people in this building;  I was supposed to die 3 years ago when I was placed on Palliative Care;  so I've said all my goodbyes, many times over to many people in my life.

Up until I read the article in thebody I thought of myself as a dying person, all the people around me, think of me as a dying person.

Somehow, this has to be changed and re-examined.  What may have been true 30 years ago is no longer true today.

Now I'm so grateful to hear people talk about their age and the years they have been HIV+  I am an aging person, not exclusively a dying person.

So, how do I change my thinking, after all these years....suggestions?


Submitted by Angie DuBois

Hi Gisele. I think this is one way. I just turned 55 several days ago. I'm fortunate that I live on my own, without assistance. My diagnosis came in 1999, although I think my (ex)husband infected me in '93. Connecting with others in similar circumstances could certainly help.
That's a great quote at the beginning of your post. I try to get outside on my days off from work. It's just too easy to lock myself away, which depresses me further.

Submitted by Angie DuBois

Hi Gisele, like many others, I thought i was the only one on the planet infected with this thief called HIV, well, it feels that way, I am a 54yrs old nurse for the past 33yrs, an advocate,educator,supporter,palliative/hospice nurse(all involving the care of HIV clients), I walk central park every year to raise awareness and funds starting in Washington D.C more than 20yrs ago. I was infected 2006, with guild and shame I became my worst enemy I knew what to expect due to 30 yrs of carefully listening to people living and dying daily, especially in the late 80's. Its my own secret sin, but i will not let it rob my live, oh, did i mentioned consequently I was also diagnosed with polymyositis due to HIV, I'm taken an additional 9meds a day in order to function, I decided to do everything possible to live a quality of life that I believe I truly deserved, I am not depending on someone else to make me feel whole. But I am going at it 100%, I refused to be robbed anymore. I don't believe at this time I need to share this findings with friends or family, no unnecessary additional stress.

Be Well,

Submitted by celina5000

Dear Camille, I was happy as well to learn that I wasn't the only long term survivor, which I guess is an antiquated term now. Seems we've moved right on into a new era. The 50+ HIV ers. I sometimes wonder what my life would have been like if I hadn't disclosed my status. However, there was only so much illness I could hide. Your nursing job is already taxing for any nurse. I wonder how you manage. But you're clearly a very strong and caring person. I know from experience, that being with people can be very energizing, and that's something I miss being at home, receiving palliative care. Being treated like a sick person is isolating. People seem to think that a nursing visit, a hospital bed and living in an assisted living facility means they've done all they can. I've written a book about my life with 27 years of HIV. It's in the process of being published. I continue to write, mainly poetry. I guess I'll be writing about the next few decades with HIV. Never say never. Anyway, just wanted to connect with someone like me. It's encouraging to know you're out there. Courage and peace. sincerely, Gisele

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