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Disability retirement

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Rlonny:
Hello.  This is my first time posting to the forum.  What I want to share is that I am 55 yr. old male and HIV for 25 years.  I have experienced the many health ups and downs over the years.  I was fortunate to work either full time or part time throughout.  The most difficult time was with 80 Tcells in the early 90's..  In 2009 I was diagnosed with Hodgkins Lymphoma Stage IV.  This diagnosis was made after 6 months of major illness (Docs couldn't figure it out at first).  I was treated for one year, went into remission.  Then back to work in 2010. This was a major struggle both mentally and physically.  By the end of 2010 I felt I was spent then was approved for Long Term Disability in July 2011.  I had worked for 37 years so the decision to "retire" was very difficult.  I wasn't afraid of having nothing to do.  I was worried about finances. I was afraid of being judged.  I have numerous HIV friends who warned me about the judging experiences. AKA I'm not bed ridden.  I know I have been judged for not working either by direct communication or it was inferred.  I am not so sensitive that I can't handle regular social interaction. It's just getting old and I'm tired of it.  So my wish is to hear from other people who have experienced this/advice. 

Buckmark:

--- Quote from: Rlonny on February 13, 2013, 11:33:49 AM ---Hello.  This is my first time posting to the forum.  What I want to share is that I am 55 yr. old male and HIV for 25 years.  I have experienced the many health ups and downs over the years.  I was fortunate to work either full time or part time throughout.  The most difficult time was with 80 Tcells in the early 90's..  In 2009 I was diagnosed with Hodgkins Lymphoma Stage IV.  This diagnosis was made after 6 months of major illness (Docs couldn't figure it out at first).  I was treated for one year, went into remission.  Then back to work in 2010. This was a major struggle both mentally and physically.  By the end of 2010 I felt I was spent then was approved for Long Term Disability in July 2011.  I had worked for 37 years so the decision to "retire" was very difficult.  I wasn't afraid of having nothing to do.  I was worried about finances. I was afraid of being judged.  I have numerous HIV friends who warned me about the judging experiences. AKA I'm not bed ridden.  I know I have been judged for not working either by direct communication or it was inferred.  I am not so sensitive that I can't handle regular social interaction. It's just getting old and I'm tired of it.  So my wish is to hear from other people who have experienced this/advice. 

--- End quote ---

Welcome, Rlonny.  I'm sorry you've been through so much with HIV.  I think you will find a number of members here in a situation similar to you:  having gone on disability because after having HIV for a number of years, due to complications and other related problems.  These days, many folks believe -- especially the yung'uns -- believe that HIV is universally manageable with just a few pills a day, but us long-termers know that is not the case for *everyone*. 

I'm 23+ years with HIV, and still blessed with decent health and able to work, so I'm not in your situation.  But I'm not surprised that people are judged for being on disability:  our society has a strong bias towards believing that people on disability are somehow freeloaders, "takers", or otherwise not deserving.  That's not unique to HIV, but in the gay community, the term "disability queen" is sometimes hurled as an epithet to HIVers on disability.   :-[ 

To some extent, you'll have to stand up for yourself, and also grow a thick skin to handle those insensitive types.  You gotta own it, just like you gotta own having HIV.  And also consider if there is some part of you that also has some shame about going on disability, that is exacerbating the problem.   Perhaps you can just portray yourself as "retired" to most people, except close friends, and leave it at that?  People do tend to be nosy, though.

Hang in there, and welcome.  I'm glad your Hodgkins is in remission!

Henry

darryaz:
I've seen a lot of posts on here about the prejudice against "disability queens" so when I meet new people I give limited information and put a positive spin on it.

If someone asks me what I do for a living I smile and tell them, "Oh, I got to retire early".  And that's all.

For people I eventually become friends with, I'll share all the gritty details later on.

aztecan:
Hey Rionny,

I am sorry you have had so many run-ins with HIV. The decision to go on disability is a tough one for many.

I look at it this way. You have worked and paid your taxes for many years, supported yourself to the best of your ability and now, as the fates would have it, you need a little help from the system you so diligently pain into.

If others want to judge you, that is their problem, not yours. Don't let their negativity and stupidity infect your life

You have already proved you are a survivor. You should hold you head up proudly.

HUGS

Mark

Mishma:
Like so many of us LTS you've been to hell and back and it is NOT your fault. I ditto all of Henry's advice and add that we're at the age when HIV- folks will start to catch up with all the crap we've gone through. My wife and I attended a funeral yesterday for a friend who was one year away from retirement; cancer as well. Fewer and fewer people, as time progresses, will NOT have something physically to complain about.

If you are still capable I bet there are plenty of volunteer opportunities you could try. If nothing else it takes your mind off your own issues. So much of our identity and sense of self-worth is tied up with what we do/have done for a living that I'll admit I was somewhat shell shocked when I had to go on SSI, some 8 years ago. Volunteering has helped me cope with my own self worth aspects.

It is hard enough when we start judging ourselves but when we internalize and personalize the judgment of others, especially without due cause, we run into problems. Frack the bigots.

This is your journey, not theirs. Glad you are in remission and I wish you good luck and better health now and in the future. 

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