Guilty until proven innocent

January 8, 2014

Doubts. They come from parents, friends, children, siblings, doctors, co-workers, classmates, bosses, teachers, and strangers.

I get dirty looks when I park in a handicapped space. Doctors have questioned if it was “all in my head.” My sister thinks I exaggerate my problems.

And then there’s the government and insurance companies. I was denied long term disability insurance, but incredibly, I won the appeal. I applied for the disability version of medicaid and was denied. Luckily, I qualified for and received the low income version. I applied for social security disability insurance and was denied. I appealed and was denied again. Now I have a hearing coming up very soon.

I know this is considered standard practice, but it’s not right. They are so concerned about fraud that truly sick people go without the benefits we deserve. There was another article in the paper today about a massive fraud scam. These people are scum. But just because they fraudulently got SSDI, does that mean I should be scrutinized so much harder? There will always be assholes and criminals in this world, but I’m tired of being treated like one just because others exists. I’m tired of so many people assuming I’m not truly sick. They seem to assume I’m guilty of lying to them, of fraud, until I convince them otherwise. The burden is on me to convince them that I’m sick, even as I’m too sick to do so properly.

The system is broken. Anyone who has tried to get through it knows this. And I’m so damn tired of being punished because other people  get away with fraud. Don’t punish me for their guilt. I didn’t do it. I’m innocent. And I deserve to be treated as such.

If only others felt the same way.

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

Broken leg vs. chronic pain

January 7, 2014

It was unseasonably warm here in Boston yesterday, so of course I was in excrutiating pain. It’s an odd symptom, but it’s a consistent one. I made a comment about how I was probably the only person in the city who was looking forward to today’s brutally cold temperatures. A neighbor pointed out the risk for slipping on the ice and breaking a leg.

I understand why he was concerned, since he had a bad fall on the ice once before and did break bones. On the other hand, he just wasn’t listening to what I was saying. Yes, today he might fall, and if he does then he might get hurt. But yesterday I was definitely in horrible pain. I won’t debate which kind of pain is worse, since I’ve never broken a bone and have no way of knowing. But I do know that his healed and he’s now pain-free. I can’t say the same.

I’ve encountered this kind of thing so many times, and you probably have, too. People assume that their potential for pain is to be avoided at all costs, even if it means I’ll definitely be in pain. In this case we’re talking about the weather, so we can’t control it, but it happens in other ways, too. They think they’re worse off having to climb 5 flights of stairs with a healthy body than I am if I have to climb one flight with a sick body. I remember climbing 5 flights with a healthy body. I used to do it a lot. I didn’t like it, but 10 minutes later I’d forgotten all about it. I can’t say the same now. Now, 1 flight could hurt for the rest of the day.

Other people’s pain matters. I’m not saying that it should be ignored. But just because I’m in pain every day, doesn’t mean that I don’t want to avoid making it even worse than it already is. It’s not a contest. Really, it isn’t. But shouldn’t the definite be avoided even at the cost of creating a possibility?

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

Dear laundry machine customer service guy

January 2, 2014

Context: I live in an apartment building that contracts out it’s washers and dryers. The company that handles them has been doing a lousy job lately. I had to deal with a broken dryer twice recently and today I had to deal with a broken washer.

Dear laundry machine customer service guy,

You might think I’m overreacting to your company’s broken machine. You may think my response is out of proportion, even though this is the third time in a row I’ve had to deal with a machine that didn’t work right. Here’s what you don’t 20140102_214125understand: I’m sick. No, I don’t just have a cold. I mean, I have a chronic illness, so I’m sick all the time, every day. Doing laundry is a big fucking deal for me. I set aside an entire day to do laundry because it wears me out. On the days I do laundry I know I might not be able to run errands, cook dinner, or clean up around the apartment. I certainly can’t socialize with anyone. So doing the laundry is a big fucking deal.

Today I set aside the time. I made plans. I planned to go down to the basement 3 times: once to put my clothes in the washers, once to put them in the dryers, and once to bring them upstairs. Your broken machine meant I had to put my clothes into a different machine, which meant a 4th trip to the basement.

It isn’t just about the extra $2.50 to run a second washer after the first one didn’t work out. Sure, $2.50 means more to me now than it did when I had a job, but it’s still not about that.

It’s also not about the extra 45 minutes to travel to the basement, find my unclean clothes, and run them through another machine. Sure, I’m not happy about that. I didn’t plan on it. I might have had to be someplace or do something. There might not have been another machine free. But no, it wasn’t about that.

It as about the extra pain and the extra loss of energy. It takes so much effort for me to do laundry that I try to only do it on my best (aka least sick) days. But that doesn’t mean I’m completely healthy on those days. By that last trip to the basement, my knees were starting to buckle. I felt the pain. And I was more tired than ever. Some days I can barely bring my laundry back to my apartment and I don’t have the energy to fold it. Why should I have to expend more energy because of your broken machine?

If this was the first time, I’d let it go. I’m sure that to you it’s no big deal. But for some of us, doing a load of laundry is a big fucking deal. It’s tiring and painful and incredibly difficult.

And I’m one of the lucky ones.

Sincerely,

A pissed off customer

1 Comment | Educating, Fatigue, Frustration, Insensitive, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Sometimes I want someone to get as sick as me

October 17, 2013

I’ve always been a kind, generous, compassionate, empathetic person. I know that sounds like bragging, but it’s just the truth. I always want to help others and I never want anyone to feel sick or hurt in any way. A friend posted a picture on Facebook today of circus elephants and all I could think was, “Those poor elephants!” So you can imagine how hard it is for me to admit that sometimes I want others to get as sick as I am.

For a long time I’ve fought this. I’ve tried to tell myself that I didn’t really mean it when I thought this way. But that wasn’t true. The truth is, there are some people who I want to feel bad. I don’t feel this way about all people, of course, but it’s still there.

But when someone says that all people wanting prescription painkillers are just trying to abuse the system, I want them to feel horrible, chronic pain. I want them to be in pain every single day, horrible pain, can’t-think-properly pain, want-to-cut-my-arm-off pain. I want them to know it will be for the rest of their life. Then maybe after a few weeks, after they’ve had to deal with the physical, emotional, and social fallout, then maybe they can feel better.

When someone suggests that I should really be well enough to work, that a little exhaustion can’t be that bad, I want them to experience my exhaustion. I want them to miss friends’ weddings, fun outings, living life, having a job, feeling young, feeling independent. I want them to worry about ever dating, getting married, having children, having pets. Then after they’ve fully experienced the horribleness of it, then maybe they can get better.

When politicians say that the already underfunded Social Security Disability system should be cut back because of fraud, I want them to get so ill that they can’t work, apply for benefits, get denied, appeal, get denied again, and then question how they will pay rent, buy food, and live in general. After they’ve fretted and suffered for a while, then I suppose they can get better.

When someone says that we don’t need healthcare reform in this country I want them to get really sick and try to get care. I want them to see that even with health insurance, it can be very expensive. I want them to see that health insurance doesn’t cover it all. I want them to see how hard it can be to get health insurance and how easy it can be to lose it. I want them to spend dozens of hours fighting with insurance companies instead of using those hours to get well. Then they can get better.

When someone judges me, thinks that I’m not too sick to do the things they can do, thinks I shouldn’t be out of work or “acting” sick, I want them to get exactly what I have. I want them to feel the exhaustion, pain, and fear, all while “looking good.” I want them to be judged and to have to defend themselves constantly. I want them to break down crying because it’s all too much. Then I suppose they can get better.

You see, I don’t want these people to feel as sick as me forever. I’m actually not all that vindictive. But I want them to feel it for a while so that they understand. So that they have some compassion. I just want understanding and I really don’t think anyone can understand unless they’ve been through it.

I hate to admit all of this. Today was the first day I admitted my true feelings to myself. Maybe it makes me a horrible person, maybe not. But it’s how I feel and I won’t pretend otherwise anymore.

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

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