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

Enduring their sadness

May 19, 2012

I love that people care enough that they want me to get better.  I just wish they’d stop asking me how I’m doing.

Last fall I wrote about how difficult it is to reassure people, but yesterday brought it all crashing back harder than ever.  People ask how I am and they want so badly to hear that I’m doing better.  I’ve had to ask people to stop asking.  I know it’s hard for them, but it’s a lot harder for me.  Thankfully, they’ve all been respectful of that so far.

Unfortunately, that doesn’t work for everyone, especially my grandparents.  There are two reasons why it’s especially hard with my grandparents.  For one thing, their memories aren’t great these days, so they’ll ask me how I am, forgetting that we just had that same conversation the day before.  I’ve asked them to back off, and they did for a while, but then they forgot.  This is not their fault.  But it’s still difficult.

The other problem is that their health isn’t great.  I know that a big part of it is that they want to see me improve before they die, which could be soon.  It used to be that they wanted to see me married while they were still around.  Thankfully, they’ve adjusted their expectations of that (though I’m sure they’d still be thrilled to see me married, just like I’ll be devastated if my future spouse never meets them.)  The hard part of this is that they are being so selfless.  They want to help me and are frustrated that they can’t.  There is nothing they can do now, but they still want to know that I will be ok in the long run.  I want desperately to assure them that I’ll be fine, but I just can’t do that.  I’ve thought about faking a fiance.  I could probably manage that, actually.  But I can’t fake my health.  There is just no way I can pretend to be healthy.

So yesterday was another hard day.  Again, they asked how I was doing.  Again, they were disappointed that I’m not all better.  Again, they talked about me going back to work and again, I had to explain that I can’t do that right now.  Again, I avoided the obvious, that I may never improve.  I came home wanting to cry.  Just writing this I’m getting tears in my eyes, something that almost never happens.  It is so hard to see the people I love hurting.  I wish I could get better for them, but of course, if I knew of some miracle cure, I’d have done it already.

There’s really no choice.  I will keep plodding along with the various treatment options that I’m finding.  I will continue to research doctors and other medical practitioners, medications and diets and other treatments.  I hope that sooner or later something will work.  In the meantime, I will have to continue to tell people that I am not better.  And I will have to continue to endure their sadness.

4 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Kindness, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

Being treated like a child

March 30, 2012

“Remember, you don’t have to bring anything to the brunch.  No food, no flowers, just save your money and take care of yourself.”

I know my mother means well.  Her instinct is to take care of me.  But I’m getting sick of it.  And it’s not just her.

I appreciate that people want to help.  I really do.  It’s sweet.  But I’m an adult, and if I say that I want to bring something to a family brunch, then why stop me?  Everyone else is bringing something.  If I didn’t feel up to it then I wouldn’t offer, but if I want to contribute, why stop me?  A few years ago this made sense – my cooking was atrocious.  But now I can cook and I’ve been bringing food to potlucks for many years.  And hell, I can at least put together a fruit salad!  Either way, I can make a contribution.

What bothers me most, I suppose, is that people don’t trust my judgement.  I say I can do something, and they still want to protect me. It’s nice when people want to help, but it’s demeaning when they go too far.

So tomorrow I will have a little chat with my mother and I’ll try to explain this.  I will point out that she isn’t trying to stop my younger sister from bringing food, so why try to stop me?  I’m capable of it, so it’s my choice.  I just hope she understands and can fight her motherly instinct.

After all, I’m not a child anymore.

~~~~~~~~~~

If you can relate to this, please pass it along and share the camaraderie!  Thanks!

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Insensitive, Intrusions, Limitations, Rants, Thoughtfulness | Permalink
Posted by chronicrants

Fearing disbelief

March 5, 2012

When I was in 7th grade, one day I suddenly had a lot of pain in my wrist.  My parents brought me to a doctor, who told me to wear a splint for 6 weeks and it would be all better.  Boy was he wrong!  This was to be the first of many symptoms.

Fast-forward to the tender age of 17.  I had seen many doctors – internists, orthopedists, surgeons (yet for some reason, no one suggested neurologists or rheumatologists) – and they didn’t know how to treat me.  They suggested I see a different kind of doctor: a psychologist.

I have nothing against psychologists.  In fact, I have a big problem with the social stigma surrounding mental health in the United States.  But in this case, it was upsetting that the doctors all thought this was in my head.  Then some family and friends started to think so too, and that was even worse!  Some thought that I was making up the pain in order to get attention.  Others thought that my subconscious was making up the pain.  It got to the point that even I started to wonder!  My mother was the one person who never believed their hype – she always knew that the pain was real.  I am so thankful for her.  I can’t imagine what would have happened to me if she hadn’t been in my corner.

My disability benefits were due to run out last week, and try as I might, I can’t get the overworked case manager to call me and tell me if I’m approved for a few more weeks.  I was worrying about this today when I suddenly realized why I’m so nervous: I’ve had years of people not believing me, and what if the insurance company stops believing too?  Those doubters when I was 17 were only some of the doubters I’ve faced.  There have been so many.  I still face the problem now, but I have a better handle on dealing with it.  With an insurance company, though, it can be very hard to argue. There’s no real person to convince, just an entity.

Now that I’ve recognized the fear I feel, the lasting affect of those years of being doubted, I hope that I can overcome it.  I hope that I can feel confident that people will believe me (or at least that I’ll convince them easily enough.)  It will take a lot of work; afterall, I’ve been facing the disbelief for many, many years.  Still, now that I recognize it, it’s time to get over it.

I refuse to waste any more energy on worrying about what other people think.

~~~~~~~~~~

If you can relate to this, please pass it along!  Thanks!

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Milestones, Pain, Rants, Support, Symptoms | Permalink
Posted by chronicrants

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