You know what happens when you assume

April 26, 2013

She called me up in tears. She wanted to talk specifically to me, because she knew I’d understand. Now that I’m remembering it, I’m just so angry!

Amy was having a bad day. She was worried about her sick elderly father. She was just told about a potentially career-altering problem at work. She’s still helping out her husband while he recovers from surgery and can’t do as much around the house as usual. She was in a lot of pain, even more than usual. And to top it all off, she’d just gotten bad news from her doctor. It was a bad bad bad bad day.

On the way home from taking care of her father, Amy stopped to pick up take-out food for her and her husband. She couldn’t Handicapped Parkingmanage to cook. She was exhausted and in pain and didn’t think anything of pulling into one of the handicapped spaces. Like me, some days she doesn’t bother with those spaces. It just depends on how she feels. But just about every day, like me, she looks healthy even though she’s not.

Food in hand, Amy returned to her car to find a hand-written note on her windshield. Someone had written that she didn’t look handicapped so she shouldn’t be parking in that space. And like any one of us who have gotten a similar note, dirty looks, or hurtful words thrown at us, she was angry, upset, hurt, and felt the need to defend herself. Of course, the writer of the note was no where around, so all she could do was go home and cry.

I am glad she called me, because I do understand. And at the end of the call, she seemed to be feeling a bit better. I suggested some self-care: a shoulder rub from her husband, good food, a relaxing movie, and lots of sleep. I told her to call me back if she needed to cry or yell, and to throw or punch a pillow. She apologized because she never complains, but I pointed out that she can’t just keep this bottled up.

And neither can I.

Everyone with an invisible disability experiences something like this at some point in their lives. I’m sorry, but it’s true. I have experienced it more times than I want to think about, but still fewer times than I’d expect. Over the years, though, I’m sure I’ll experience it more.

I applaud those who call out people who truly are fraudulent. I often report cars without proper tags that are parked in handicapped spaces. But none of us has any right to judge others for their perceived abilities or lack thereof. No, I do not look like I need to park in handicapped spaces, but I do. No, I do not seem to need a wheelchair, but some times I do. No I do not look like I’m unable to stand on the bus or train, but I am. No, I do not look like I am unable to work, but I am. That is my reality. It’s no one else’s.

And it’s no one else’s to judge.


A letter to my disability insurance company

March 28, 2013

Dear Assholes,

To begin with, I am a living, breathing, feeling human being. I know that may be hard for you to believe, but it’s true! I have thoughts and feelings, just like you. Well, not just like you, per se, but like most human beings.

Next, let’s consider that I am very sick. And remember that stress makes my illness worse. And not having a source of income while also dealing with you and with lawyers is very much a stress-inducing situation.

Now, let’s look at our goals:

  • My main goal is to get my health back. My secondary goal is to get you to give me the money you owe me so that I can pay my rent and, importantly, pay for medical treatments that aren’t covered by health insurance.
  • Your main goal is to save money by never paying me. Failing that, your goal is to save money by getting me to go back to work so that I no longer need your payments.

Please correct me if I’m wrong about your goals, but for the sake of this letter, let’s assume they’re true. First, are you really saving money by denying my claim? In this process you are paying staff to handle the matter, lawyers to handle the legal aspects, and doctors to review my files. My guess is that many of these people are paid at a high hourly rate. Are you really paying them less than you would be paying me if you had just approved my claim to begin with?

Next, you want me to work. If I work, you don’t have to pay me. From my file, you should see that I want to work also. I have a solid resume. I have held multiple jobs in the past, even while suffering from chronic pain. I have worked almost non-stop (except for school) since I was 14. When my symptoms got worse in 2011, I tried to continue working past when I was really healthy enough to do so. I continued because I wanted to work. So of course I’ll return to work as soon as my health allows it. This means that our goals now align: you want me to be healthy enough to work and I want me to be healthy enough to work.

So how do we get me healthy enough to work? Well, I am pursuing various treatments. There have been three things that have slowed me down which you can help to improve:

  1. When I lost my health insurance, that slowed things down. I had to skip seeing doctors. I couldn’t pursue treatments. I had to stop taking a vital medication for a month, then spent another month recovering from the affects even when I resumed taking it. Gee, thanks for taking away my health insurance.
  2. Money is an issue. There are tests I would run and medications I would take, but I can’t afford them right now. If you had given me the payments you owed me, I would have done these things.
  3. Stress is very bad for me. It has been preventing my adrenals from recovering from my adrenal fatigue, and that in turn has worsened my thyroid problems. In fact, just in the last few months, since you jerked me around by delaying your decision on my appeal, my TSH has jumped from way too high for me to way too high for anyone. Stress has increased my fatigue and my pain. Stress has prevented me from making any strong strides towards improvement. Of course, I only have two sources of stress in my life right now: my health problems and this insurance mess. Why is this insurance mess causing stress? For a few examples, I don’t know if I can renew the lease on my apartment. I don’t know where I’ll be living in a couple of months. My bank account is almost empty. I have spent years and years of savings. I can’t go out to eat with friends, go to a museum, see a movie, or do most other social things, even on the rare days I feel well enough to do so. I’m not sure if I should be selling my car (but how I would I get to doctors?) or get rid of my cell phone. I don’t know if I should be applying for Section 8 housing. These are major issues that are in limbo, and have been in limbo for a long time. Oh, yeah, and I haven’t been able to file my taxes yet!

Let’s see how you could help:

  1. Approve my claim and I’ll once again have steady health insurance coverage.
  2. Approve my claim and I’ll have enough money to run all of the tests I need and to take all of the medications that might help me.
  3. Approve my claim and my stress will go away almost completely. My adrenal glands can recover, and then we can treat my thyroid directly.

You see, if you would just treat me with some decency and respect, if you would approve my claim and meet your deadlines, if you would communicate with my lawyer so that I know what’s going on, then we would all be happy: I could get health and go back to work, and you could save money.

Now ask yourself: why aren’t you doing it?

Not-at-all-sincerely,

                 A pissed off patient


Why can’t you explain everything about your body?

March 23, 2013

My energy is low so this will be short. But I think short is fine – after all, we’ve probably all experienced this, so you know what I’m talking about. And if you’re one of the people who asks these questions, you’ll quickly see why you should stop doing that. Right now!

When someone asks why I can’t climb a bunch of stairs, I say I have knee pain and they accept it. They don’t ask what causes the pain. When I say I can’t lift something because I have a “bad back” they accept it. They don’t ask what causes the back pain. When I say I can’t eat gluten, dairy, broccoli or anything else because it will make me sick, they ask why it will make me sick. They want the details. They want the medical explanation. From me!

  • Why can’t you eat gluten?
  • Why can’t you eat broccoli? It’s so healthy!
  • What is it in gluten that makes you sick?
  • Will you ever be able to eat X again?

I’m so sick of those questions! I think my new response will be: the last time you had a cold, what exactly was happening in your body that made you feel lousy? What were the germs doing? Oh, you don’t know every detail of the biology of the human body? Well, ME NEITHER!

I think it’s important to be a well-informed patient. I try to learn as much as I can. I know about the various thyroid hormones and why a Free T4 test is better than a Total T4 test. I’ve read about what every thyroid hormone is supposed to do in the body, how they affect organs, how they should interact with cells. Do I remember every detail? No. Just like I don’t remember every detail of what causes a leaky gut. Or a connective tissue disease. Or how my car engine works.

Maybe my problem is that I am informed. I know a lot, so people expect me to know everything. I try to point out to them that I’m not a doctor and I didn’t spend 4 years in medical school, so my knowledge is limited. And yet, they expect me to have all the answers. What can I say? I DON’T KNOW! There’s nothing wrong with not knowing. But I shouldn’t have to constantly state it, repeat it, explain it, and justify it.

I know what I need to know about my body. I know which foods to avoid. If you want to know more than that, look it up online or in the library. Then let me ask you about it in 6 months and we’ll see how well you remember it.


More disability insurance bullshit

February 28, 2013

The other day I wrote about the inanity of the disability insurance system. Today I finally got in touch with my doctor and she read off the questions they sent her.

First, I love my doctor. When they called her, she refused to answer their questions on the phone and insisted that the questions be sent in written form. Lovely. And she’s going to send me a copy in advance so my lawyer and review it before she sends it in. Let’s just hope it helps me.

So anyway, she read the questions. And I didn’t like them. There were some along the lines of, if Prednisone and Plaquenil were helping me, why did I go off of them. Um, HELLO?!?!?!? These are not drugs to stay on long-term if you can help it! Why on earth would they suggest otherwise? And of course they asked why I didn’t try other disease-modifying drugs. I wonder if they mean the drug that’s in a class I’m allergic to, the one that causes permanent infertility, or the chemo drug? Because those are the only options I haven’t tried. Anyway, these questions are all focusing on treating the pain, and if you’ve been reading this blog for any length of time, you know that pain is not what’s keeping me from working these days. It’s the fatigue that’s stopping me from working, dating, spending more time with friends and family, getting out of the house many days… you know, having a LIFE!

Of course, the problem is that these insurance folks don’t see a person in those medical records. They see symptoms that could cause them to have to pay out lots of money, and they don’t want that. So they’re looking for a way to not pay the money. Even though if I had the money, I’d probably get better faster because I’d have more stable health insurance and more money to pay for treatments that aren’t covered by insurance, not to mention less stress and more stability in my life. But no, they’d rather try to avoid paying at all, which just delays my treatments, which means that if I do eventually win, I’ll be on the insurance for even longer. I’d rather get the money now so I can get better and then go back to work. And then they wouldn’t have to pay me at all.

Maybe I should buy a lottery ticket instead. Because, yeah, that always works.

I have to find a way to get healthy. I have to get healthy, start socializing again, go back to work, and then figure out how to fix this ridiculous, unfair, broken system that is completely stacked against the patient. I need to figure out how to lobby legislators or whatever to provide some fairness to this joke of a system.

It’s just not ok.

I used to end every post by asking readers to share it. I stopped doing that because I don’t think it helped and I’m less concerned by the quantity of readers than by the quality of readers (as in, getting people who are in some way helped or entertained by my writing.) But this time, I’m asking you to please share this and any of the other insurance-related posts. It’s so important to start opening people’s eyes to this. Everyone is so focused on health insurance. Yes, that’s important, but disability insurance is important too. And what’s the point of having it if they won’t provide the service that you’re paying for? People need to start realizing this, so that we’ll have more support as we work to improve the system. So please consider sharing this on Facebook, Twitter, Reddit, or whereever else you are. Or even by old-fashioned email (does that make me sound old?) For all but the last, just use the little buttons below this post. It’s a small way to help me work towards one day changing the system.

I can hardly wait to get started.


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