I’m tired of defending myself against bigots

June 25, 2013

The disability insurance company is trying to prove I’m not really too sick to work. Social security is trying to prove the same thing. My sister apparently has similar thoughts. Medicaid is doing the same thing. And many doctors over the years have thought it was all in my head or that I was exaggerating.

So many people, more than I want to think about, seem to think that I’m not doing enough to get better. They think I should be seeing different doctors and taking magic pills so that I’ll be perfectly healthy.

The Supreme Court is due to hand down decisions on Prop 8 and DOMA this week. These two cases regarding same-sex marriage will change the lives of many people close to me. They will change my life too. If same-sex marriage becomes more commonplace in the US, people will become more accepting of it. I have no doubt of that. And that would make things so much easier.

Even within the LGBT community, so many people say that bisexuality doesn’t exist. Bisexuals aren’t real. They talk about “gay marriage” as if same-sex marriage only affects the gay and lesbian communities.

For the first time in a long time, someone said an anti-semitic slur to me today.

Strangers seem to think it’s ok to call me “honey” or “sweetie” in a diminutive way. People often assume I’m not good with math or with computers. They assume I can figure things out in logical ways. When I get upset, people have suggested that it’s “just my hormones.” They make it clear that my thoughts, feelings, and abilities are less valid to them because I am a woman.

I’m so tired of defending who I am. I am me. That’s it. End of story. So if you have a problem with people with chronic illnesses, or with bisexuals or Jews or women, or with a member of any other minority group, you should think about what’s wrong with you that you think you have to be better than everyone else. Then take your nasty thoughts and keep them to yourself.

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

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.

4 Comments | Educating, Frustration, Insensitive, Intrusions, Parking, Rants, Support, Symptoms | Permalink
Posted by chronicrants

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

4 Comments | Expectations, Frustration, Healthcare, Insensitive, Rants | Permalink
Posted by chronicrants

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.

1 Comment | Educating, Frustration, Gastrointestinal, Insensitive, Intrusions, Rants | Permalink
Posted by chronicrants

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