Disability insurance: Where’s the fairness?

March 20, 2012

In about two weeks my short term disability (STD) insurance will end.  My health will probably be no different than it is today, but my insurance will disappear.  Luckily, I paid into my company’s long term disability (LTD) insurance.  Last week I got all sorts of information about this benefit.  I learned how much it will pay, how the money will be taxed, and how my other benefits, such as health insurance and the FSA, will be affected.  Of course, this is assuming that I get LTD.

My rheumatologist has been on vacation for over a week.  When she gets back later this week, she will find some forms that are waiting for her at the office (assuming the postal service delivered them on time.)  I hope that she fills out these forms and sends them in quickly.  I must fill out my own set of forms, with crazy questions like asking me to list all of the illnesses I’ve had in the last 5 years, and send them in.  And then I wait.  I wait and I hope that my application is approved the first time around.  As I wrote a couple of weeks ago, after years of people not believing that I had a real health problem, I still get nervous about this kind of paperwork.

Still, I will probably be approved.  I now have years of medical records that document my condition, and doctors who will explain why I can’t work.  I feel so fortunate.  The payout is decent – enough to pay all of my bills if I’m frugal.  I get to keep my (very decent) health insurance.  I lose some benefits, such as the FSA, but so be it.  I can even work to a certain extent while I am on LTD (when I eventually feel up to it.)  This is all much better than what I had expected.  But there’s one thing that really bothers me: fairness.

Ok, the world isn’t fair.  We all know this.  Still, it doesn’t seem right that I get this benefit because I worked at a company that provides LTD, while so many others do not.  If I had gotten sick 10 years ago, I’d simply be unemployed now.  And if my current inability to work doesn’t improve within the 2 years that I have LTD?  Then what?  Social security is a joke – it wouldn’t even cover my rent right now.  Even if I moved out of state to an area with a lower cost of living, it wouldn’t be enough.  I would be on Medicaid and food stamps and would still have trouble paying the bills.  Is this the way we want our system to work?

I feel so grateful for the amazing benefits I have, and so horrified that they are not standard.  I can not understand why more people don’t stand up and insist on receiving these kinds of benefits.  I suppose everyone thinks it won’t happen to them.  That’s what I used to think.  But most of us know someone who has had to deal with illness, so isn’t it just possible that it could affect us too?  We need outrage right now.  I’m too tired to fight for this kind of universal benefit right now, but when I get my energy back, when I’m feeling better, it will be right near the top of my list.  When I go back to work, I want to fight for equality and fairness.  It’s an uphill battle, but one that I look forward to fighting.

 

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Where’s my crystal ball?

March 13, 2012

There are so many reasons why it would be nice to see the future.  I’d love to know if I’ll ever get married.  Will I have kids?  Will I get a better job?  Will my family be happy and healthy?

But right now I want to see the future for a different reason.  I accepted certain parts of my illness a long time ago, but this current downslide is different.  This is something that I never expected, and I’m aching to find out if I will get better… or not.  If I won’t get better, then at least I can try and learn to accept it, but if there’s a chance that I could improve then I’ll keep fighting.

I came up with an action plan today.  There are a lot of -ologists involved.  I’ll try everything from an endocrinologist to a hematologist, from a psychiatrist to a neurologist, but it would help so much to know if any of them will work before I spend a lot of time, energy and money on them. And I want to know if I’ll ever go back to work, if I’ll ever have the energy to really date again, if I’ll be able to go out for an entire afternoon again.

There are no certainties in life.  Health is unpredictable.  We just have to take things as they come.  Who hasn’t heard all of this before?  I can’t argue with it – it’s all true.  But I’d still rather have a crystal ball right now.

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Enduring a kerfloofy week

March 12, 2012

This is the longest blogging gap I’ve had so far.  When I started this blog in July, I blogged every day.  If I absolutely had to skip a day, I wrote two the next day.  A few months ago my health made it hard to keep up, and sometimes I skipped two days, or even three.  Then this week happened, and it’s been 7 days since my last posting.

It started innocently enough.  I skipped a couple days because I was tired.  Then I tried to blog, but I had lost my internet connection for the night.  And then things got kerfloofy. (Hmm, I thought that I made that word up, but I just check and it exists already.  Go figure.)

There are a lot of ways that I don’t handle my health properly.  I don’t do my physical therapy consistently, I don’t get enough exercise even when I feel up to it, I don’t get enough sleep.  But I do pride myself on how I handle stress.  I handled my difficult job, my ill relative, and my hurt friend all very well.  But then I got it: the long term disability application.  And my stomach has been in knots ever since.

When I left my job, I told them I’d be back in 3 months, maybe sooner.  This week I have to call my boss, then head over to clean out my desk.  I won’t be coming back at all.  As of three weeks from now, they are no longer required to hold my job open for me (and I know they won’t) and I will be in the process of applying for long term disability payments.  The hardest part of this should be how horrible I feel physically.  Most days it is.  But right now, the hard part is all mental and emotional: accepting that it has come to this.

For years I have known that I could end up receiving disability payments, but I never really believed it would happen.  I am 32 years old, and I am wondering if I will ever work full time again.  Chances are that I will, but what if….?  I would never get married to someone just for their money, but right now I sure wish I had a spouse so I could at least get on their health insurance.

The future is scary, but I know I have to find a way to deal with it.  If I’m going to feel lousy anyway, I sure don’t want to add stress on top of it all!

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Where’s the fairness? Life and chronic illness

February 29, 2012

Life’s not fair.  We hear that all the time as children.  I think it usually goes something like:

Kid (whining): I want X!

Parent: I’m sorry, you can’t have it.

Kid (still whining): But that’s not fair!

Parent: Life isn’t fair.  Get used to it.

Sound familiar?  I don’t know when I stopped thinking about fairness in that way, but it must have been a long time ago.  I don’t really believe in karma.  I do believe that if you do good things, then good things will happen to you, but that’s because I think that if you help out the people in your life, then they will help you out in return.  It’s not because I think there’s a cosmic balance in the world.  I know many people disagree, but that’s my thinking.  So I know that fair isn’t relevant.

Maybe that’s why I was so caught off-guard today when I was emailing with a friend about how on earth I can plan a date when my pain levels are jumping all over the place, and she wrote back: Sorry to hear you’re hurting so much, it’s just not fair.

And here’s my response to her, verbatim: Nope, it’s definitely not fair.  If it was fair, this would hit murderers and rapists, and it would leave me alone.  I just want to get a nice job working at a little nonprofit, date, and go out with friends.  Nope, no fairness.  But then, that’s no surprise.

Yeah, I know I sound a bit bitter, but can you blame me?  I’m sure we all have those moments.  Because no matter who we are or how we act, we could get a bad illness.  Because there are horrible people in the world who are completely healthy, and wonderful people who are very sick.  Because there are horrible people with billions of dollars, and fantastic people who are starving to death.  Because life isn’t fair.

Most days, I know that means that I just have to make the best of it.  Some days, I wallow in the unfairness of it all.  Lately I’ve been picturing what my life would be like if I suddenly got better, and it’s a lovely life.  I would get a job at a nonprofit, helping people.  I would do volunteer work.  I would go out more and do more fun things.  I would exercise and take good care of my body.  I would work to raise awareness of chronic illness and what it means.  I would not be so scared to start a family.  And then I wake up and remember that that’s not my life.  Maybe it will be one day, but that’s unlikely.  So I’m back to making the best of it.  It’s not always easy, but it’s all I’ve got.

And tomorrow I’ll ignore all of the many things in life that are unfair, and just accept reality again.  For a while, at least.


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