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Author Topic: Disability retirement  (Read 2740 times)

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Offline Rlonny

  • member
  • Posts: 2
Disability retirement
« 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. 

Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: Disability retirement
« Reply #1 on: February 13, 2013, 11:55:38 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. 

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
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline darryaz

  • Member
  • Posts: 450
Re: Disability retirement
« Reply #2 on: February 13, 2013, 12:06:27 PM »
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.

Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Disability retirement
« Reply #3 on: February 14, 2013, 10:12:06 AM »
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
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Mishma

  • Member
  • Posts: 190
    • Marquis de Vauban
Re: Disability retirement
« Reply #4 on: February 14, 2013, 11:58:54 AM »
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. 

2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline Rlonny

  • member
  • Posts: 2
Re: Disability retirement
« Reply #5 on: February 14, 2013, 02:33:50 PM »
A heartfelt thanks to each advice (replies 1-4).  I already feel better.  I can see that it is essential to work for my own self esteem and give back through activities such as volunteering etc. 

Offline mitch777

  • Member
  • Posts: 3,440
  • wish i were here
Re: Disability retirement
« Reply #6 on: February 14, 2013, 05:01:58 PM »
Hi Rlonny,
I doubt I could express the wisdom any better than has been given by the previous posts.
The only thing I could add is that I am in a somewhat similar circumstance.
Others beliefs of disability mean nothing to me.
No guilt.
No shame.
Hiv+ for 30 years and proud of myself for hanging in as long as I felt I could.
(I am still in the process of trying to prove my case to SSDI)
Best of luck and I hope to hear more about you! :)
This site is a wonderful community.
m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline wolfter

  • Member
  • Posts: 4,460
Re: Disability retirement
« Reply #7 on: February 15, 2013, 09:28:17 AM »
Best of luck to you.  I've been on SSD a few times through the decades.  It's a difficult decision but sometimes the long term affects makes it necesary to go on disability.

The first time I was approved before I even left the hospital.  Somehow my doctor and my partner applied on my behalf.  The 2nd time I was approved within a month.  After 15 years of working I needed it once again and it took almost 3 years.  I rec'd my denial notice while in the hospital and had to have it read to me because of my bout of blindness.

This experience has me scared at the thought of returning to work in the future. 

I always felt embarrased about my need for assistance but have come to realize that it's something that was needed and hold no shame at having to do so.

Take care and best wishes.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Disability retirement
« Reply #8 on: February 16, 2013, 06:30:04 PM »
I'm in agreement with what others have said, you have nothing to be ashamed about, most people don't even get approved, and didn't even pay into the system enough and therefore, have no work history quarter credits...

so hey, it was there for you, you worked for it, and you paid into it..
Nowadays that's usually not the case at all, you've paid your dues
so to speak....

I wouldn't worry about what others think, what's important is what you think about
yourself......remember that  ;)

good luck to ya, and hang-in-there

HUGS

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline AlanBama

  • Member
  • Posts: 3,613
  • Alabama: the 'other' 3rd World Country!
Re: Disability retirement
« Reply #9 on: February 18, 2013, 02:21:56 PM »
Hi Rionny

I can certainly relate;  I was forced to go on SSDI in 1995, when I had exhausted all my leave, and simply couldn't hold out to work anymore as an auditor for the State of GA.   This was pre-protease, and I was expected to die anyway; and had certainly been close a few times by then.   I hated doing it, and have always hated it since.

I tried going back to work part-time in 1999, and have worked pretty much steadily since then (part-time only).  I work about 20 hrs a week, and that seems to be enough for me.  It would be really tough for me to try to work a 40 hour work week now, with all the meds and side effects, and with my G.I. issues.

I did attempt to return to work full-time in 2000, and managed to do it for 10 months, before giving it up and re-starting my SSDI.   Mainly, because there is no such thing as a "40 hour week" anymore; if you work a "real job" as a 'salaried' worker, they expect so much of you; my field is accounting, and there is ALWAYS some deadline or other to meet, and always month-end closings, quarterly closings, etc.   40 quickly turns into 55 or 60 hrs a week.

I would MUCH rather work (and to have continuously worked all this time); if I had been able to stay on, I would now have over 27 years with the State of GA, and be making a nice salary, and have a nice retirement.   As it is, I get by on SSDI and part-time earnings.   It is tough, but I have it so much better than many I know who exist on SSI; plus I have a partner, so our combined incomes gives us a little advantage.

Have I 'taken' more from Social Security than I paid into it?  Of course.  No one "plans" to be on disability for 18 years.   If I had had a crystal ball, I might have stuck it out; but since I didn't, and had no way of knowing the protease drugs would save me, I did the best I could with what I knew at the time.  In fact, I made several "bad" life decisions, based on AIDS fear.  Now, that would be unreasonable, but in the 80's it was not.   At least now I am paying (however small the amount) into FICA and Medicare each pay period.

We do the best we can, and we play the hand we are dealt.

Best wishes to you, and welcome to the forums!

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline deibster

  • Member
  • Posts: 153
Re: Disability retirement
« Reply #10 on: April 16, 2013, 02:32:36 AM »
Welcome to the forums Rlonny,
 Your profile does not show where you live, and that has something to do with the reaction of the people whom you tell that you've 'retired.' I live in gay Provincetown, cape cod, MA. The AIDS Support Group is a big part of the social scene & there is virtually no stigma for being Poz here. Being a summer resort, many people do not work all year round. We also have a great ADAP program, called hdap in MA.

Personally, I quit working about the same time my mom had a 2nd stroke and I physically took care of her for 2 years. My neurologist wrote a recommendation for disability, as I had been on antidepressants for work-related stress for years, in addition to my HIV. I got SSDI on the 1st try, in addition to a disability pension which took 3 years of fighting the system to collect. I say I'm retired, and to friends I'm retired for health reasons. Most friends are sympathetic to that. Only if they have a gay relative, 3 friends from high school have gay sons, do I tell them about my HIV. I do volunteer work & manage my finances, etc. Best of luck and hang in there.
Hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline tony63

  • member
  • Posts: 2
Re: Disability retirement
« Reply #11 on: April 18, 2013, 04:10:19 PM »
Wow, were do I start?  I "LIVED" and now what?  I have been HIV poz for 29 years.  I went out on total LTD in 1995.  I lived in CA at the time and my doctors told me to "get my affairs in order" and go back home to MD to tell your family that you have AIDS.  It was a very difficult thing to do but I did it.  That alone can wreak havoc on your mind.  My t-cells were down to 9 and I was starting to have different kinds of problems with my health.  I sold my Life Ins Policy for almost 100k to a Viaticus company.  Hmmm, they took a gamble on my health and they lost.  I was able to buy my first house and I didn't just go and blow all the money.  I have had some major medical problems over the years, the last time being in 2005 when I got osteonecrosis  (AVN) in both of my hips.  I had both hips replaced in 2006.  The stigma of not working is really a big deal for me.  I think that a lot of people think that I am perfectly well and should have a job.  This is taking a huge emotional toll in my head.  I would love to go back to work but I don't know how.  I have been out of the work force for so long and nobody wants to hire "damaged goods" at the age of 50 now.  I have to deal with my insurance company every 10 months sending my letter for approval from my doctor.  This is another huge issue for me.  I think about losing what I have every day.  Sometimes I think that my doctor thinks I am using the "system" and I have a feeling the next time the paper come in the mail that he may not sign off on them.  Even if I went back to work, I would have to find a job with good insurance and decent pay and I don't think anyone will hire me now.  I have never been to a Psychiatrist but and so depress lately that I don't know what to do.  I feel very alone and scared most of the time.  I could go on and on but I won't.  Any thoughts from the long termers out there?
If you have read this far....thank you very much!  Best regards, Tony
Tony

Offline mitch777

  • Member
  • Posts: 3,440
  • wish i were here
Re: Disability retirement
« Reply #12 on: April 18, 2013, 04:34:18 PM »
hi Tony!

welcome to the forums! :)

I am 54 and poz for 30+ years.
I am trying hard to get SSDI (turned down twice).
My ability to work vanished several years ago but having a business that my partner (hubby) can still operate kept me from an urgent need to apply when I should have.
(just a bit of backround info)

One question I would ask you is, do you feel physically and mentally capable of working?
If you can't answer yes to BOTH I would suggest that you need to be open with how you are feeling to your doctor.
If he doesn't get it and never will, hmmm.... I would consider a new doc.

If you are anything like me, I appear at first glance to most people to be "healthy looking" whatever that means.
It can get frustrating to know that others cannot understand what we LTS have gone though and are STILL going through.

The idea of seeing a Psychiatrist was difficult for me (last October) and I am SO glad that I broke through my fears and decided to dive in.

Your story hits home with me.
Thanks for sharing and I hope to hear more from you! :)

PS- please try to not feel guilty about what others think.
this has been YOUR journey, not theirs.
« Last Edit: April 18, 2013, 04:36:55 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,903
Re: Disability retirement
« Reply #13 on: April 18, 2013, 05:55:26 PM »
Hi Tony,

I went on disability in the early 90's (SSDI) and now work part time.  I tried full time but was exhausted and sick all the time.  I also have AVN, but in my knees.  They both need replaced but that's not something I can do at this particular time.

If you feel the need to work but are unsure if you can accomplish this, you could do what I did before returning to work part time.  Volunteer somewhere a couple days a week.  Even if you can't work, you could still volunteer for whatever tugs at your heart strings, i.e. an ASO, a pet shelter, a local public assistance organization, etc.   This could get you out and perhaps help your mental health.  This is just a suggestion, only you know what you're capable of.  I agree with Mitch that this is your life.  Others don't know what you go through personally and you shouldn't concern yourself with that.  Hope to hear more from you!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline tony63

  • member
  • Posts: 2
Re: Disability retirement
« Reply #14 on: April 19, 2013, 09:27:55 AM »
Dear Betty & Mitch,

Thanks so much for taking the time to read and reply to my message.  I have been in such a dark place lately and just hearing from the both of you have moved my spirit.  I know we all have our problems but at least I know there a few others out there that understand what I am feeling.You really have no idea how much better you have made me feel this morning when I read your messages,   I am going to try and stay in touch with this forum and post and reply to our fellow brothers and sisters!  Just communicating with others in the same situation is a help.  I am going to seek some professional help.  I have been putting it off for so long.  Thank you, thank you. again!
Tony
Tony

 


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