But I want to work!

June 20, 2012

I was at a support group for people with chronic pain.  This group meets in the mid-morning on a weekday so, unsurprisingly, none of us are currently working.  As we went around the room talking about recent frustrations, I kept hearing a theme: I want to work.  One woman talked about the stress of having to declare bankruptcy.  Another spoke about getting turned down for Social Security.  I was having problems with a private long term disability insurance company.  Many spoke about money troubles.  A couple mentioned not being able to take care of their kids.  Several didn’t like having to rely on their spouse for financial support, as well as help around the house.

What do these all have in common?  We want to be well!

As I listened to everyone speak, I was thinking how much I’d love to have a transcript of that meeting to show all of the doubters.  There are too many random people in society who think that we’re just trying to get “easy” money.  There are the politicians and bureaucrats who seem to think we’re all trying to scam the system.  There are the insurers who insist that we’re not really too sick to work.  And yet over and over I heard people saying that they wish they could go back to work.  Some said it indirectly and others used those words, but we were all saying the same thing.

I hated my last job.  I won’t pretend otherwise.  But I still want to go back to work.  I want an income, I want independence, and I want control over my own life.  Right now, I would love nothing more than having the choice of returning to work.  Sadly, that is out of my control, just as it’s out of the control of the others in the support group.  If only the doubters understood just how much we want it.

Leave a Comment » | Educating, Frustration, Insensitive, Limitations, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

Long term disability insurance: Navigating a system that is designed to screw us

June 15, 2012

I’ve written about the roller coaster effect before, and it’s happening again now.  This time it’s both physical and emotional, not to mention financial.

In addition to all of the irritating, difficult, painful physical problems, I’m also dealing with bureaucratic crap.  I wrote last week that the long term disability insurance company is denying my claim for benefits, but it turns out that it’s worse than I’d thought.  As it turns out, they aren’t suggesting that I’m not ill.  Instead, they are saying that I’ve been sick for a long time and they see no evidence that it’s gotten any worse.  Basically, if I was well enough to work a year ago, I should be able to work now, too.  But how do you prove worsening fatigue?  I don’t have a blood test or MRI for that.

Then it gets worse.  According to the lawyer I spoke to (who came highly recommended by friends who used her for their own SSDI claim) I will have an extra problem because I did not see a doctor in the few weeks leading up to my leave from work.  In fact, my last appointment before leaving my job was 2 months earlier.  At that appointment my doctor and I discussed the possibility that I might have to stop working, but I don’t know if that was recorded in my medical records.  I think it’s time to cough up the money and get a copy of my own records.  I wish someone would have told me that life would be easier if I saw my doctor in person before leaving my job, instead of just speaking with her on the phone 4 separate times.  I’d have gladly done it, if I’d only known.

The lawyer talked about the many steps we would take to appeal the LTD denial, including getting letters from my doctors and from friends and family, as well as hiring a vocational expert to study my case and write a report explaining why I can’t work.  This all sounds wonderfully proactive, but there’s one part that makes me very nervous: the lawyer isn’t confident enough in my case to take it on a contingency basis.  Damn!

So basically the system is designed to screw us.  I got insurance and paid my premiums, and the company denied my claim to save themselves money.  In order to get them to pay what they rightfully owe me, I have to spend a lot of time and energy and effort and money (none of which I have any extra of) to hire a lawyer.  If I ever get well (or well enough, at least) I am going to fight this system.  I don’t know how I’ll do it, but I will get it publicized, I’ll get my legislators involved, I’ll do whatever it takes, but this simply can not be allowed to continue!  But first I need to get my own claim approved and focus on my health.

And in case you’re wondering, the appeal will take approximately 6 months and cost me $7000-$10,000, plus expenses.  Expenses are for things like paying for copies of medical records, paying for the vocational expert, etc.  If we lose, I’m out that money.  If we win, the insurance company owes me $30,000 per year and they will pay me what they owe me from the date I became eligible a few months ago.  They will not pay the legal expenses I incur.

Yep, the system sucks.

Oh, and of course this is also at the same time that I am looking into practitioners, tests, and treatments that will not be covered by my health insurance, I feel like crap daily, I am enduring the most stress of my entire life, and my scant energy should be used to research my treatment options and to recover.  Like I said, this system is designed to screw us.

3 Comments | Educating, Expectations, Frustration, Healthcare, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

A homebody, but not always by choice

June 12, 2012

It’s 9pm on Tuesday night and I am sitting in my apartment typing this.  The last time I went outside was on Sunday afternoon.  I wish I could say this never happens, that I never get confined to my apartment, but sadly, it happens far too often.

So many people comment on how good I look, or on how cheerful I am, or on how well I seem to handle all of my health problems.  What they don’t understand, even when I try to explain it, is that the reason I always appear so well to them is that they simply don’t see me when I’m not doing well.  Simple.

They also don’t understand that I’m not hiding from them.  It is very rare that I stay home so that someone won’t see me looking or acting ill.  It’s actually the opposite – they don’t see me looking or acting ill because when I feel that bad, I don’t have the energy to leave the house anyway.

So that’s where I am right now.  I felt so lousy yesterday that I skipped my errands.  I still felt horrible today, so I canceled my plans.  When I do eventually see people I’ll appear to be doing better, because if I don’t feel up to leaving the house, then I’ll just stay home.  I’m sick of my pjs and I’m tired of sitting on the couch, but right now, it’s really all I can manage, so I’ll just have to go along with it.

Oh, and in case you’ve been following and you’re wondering, yes, this is my body’s payback for the other night.  And it’s completely worth it.

Leave a Comment » | Educating, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

And the verdict is in: they’re calling me a liar

June 6, 2012

You’d think by now I’d be used to having people call me a liar, but somehow it’s still upsetting me.  Of course, they don’t actually use that word, but it’s the same message anyway.

Yesterday I got the official word that my claim for long term disability insurance was denied.  According to them, there’s nothing in my record to suggest that I can’t work at my old job.  Maybe they want a blood test to prove fatigue?  Great, invent one and I’ll happily take it!  Otherwise, fuck off.

When the symptoms first began I was a kid, and some people suggested that I was making it up to get attention.  Then there were others who believed that I really thought I was in pain, but that the pain wasn’t real, so they suggested I see a psychologist.  That was only barely an improvement, but at least they believed that I meant it.

Over the years I have had to plead my case to many people.  If I had something easily recognizable and definitely diagnosable, like cancer, there wouldn’t be an issue.  People would offer sympathy and would try to help.  If I’d been in a car crash, with the accompanying photos and x-rays and whatnot, they wouldn’t question it.  But I have invisible illnesses, hard to define, hard to diagnose, with symptoms that vary from person to person, and that vary for a given person from day to day.  So the easiest thing?  Say it’s not real and enjoy living in denial.  That’s great for them, but it doesn’t do me a damn bit of good.

To add insult to injury, every time I have to plead my case, I have to focus even more on the most negative thing in my life.  It isn’t enough that I have to live with this shit, think about it constantly, rearrange my life for it repeatedly, and give up my dreams for it, apparently it’s also necessary that I relive the worst of it just to convince some asshole that they really must pay me the money that they owe me.  Signing up for the insurance policy and paying the premiums guarantees a right to file a claim; it doesn’t for a second mean that the claim will be approved.  So how do I prove that I was so exhausted when I stopped working, I had to take a break and lie down to rest in the middle of getting dressed each morning?

I realized a few weeks ago that the claim would probably be denied, and mentally I was ready for it, but I guess that emotionally I hadn’t prepared.  Mentally I figured out what I would need to do to appeal the decision.  Emotionally, I didn’t realize how strongly I would react to being called a liar again.  Again.  Always, over and over, year after year, decade after decade, people would rather believe that I’m lying or confused than believe the truth: that this could just as easily happen to them, too.

Of course in this case, it’s probably just as much about the money.

4 Comments | Educating, Expectations, Frustration, Insensitive, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »