I am ashamed

There's a story going around the internet, and it may not have made it to your news feed yet. I rarely feel strongly enough to write about things I see on TV, but I couldn't let this go.

Judge Judy Scheinlin - a former guilty pleasure of mine - was on Fox News talking about personal responsibility. I generally don't watch TV because I like listening to opposing views and being relatively well informed.

The gist of the interview was the promotion of her book, which I will not mention or link to here, but will put up the interview on Fox News. I am not a stenographer, so take a listen.

I should have known what to expect. I don't necessarily follow partisan lines, and I have a master's degree in public administration - the running of local and federal governments. I have pretty strong opinions on the role of government and how we as citizens can best interact with them. Ask me another day about it and I'll rant for hours.

So back to Judge Judy - her message at one point during her talk on personal responsibility sort of went like this. She made some good points about SOME people relying on a system that is much maligned - the state and federal disability system. You never here about the people like Erin Kotveski Vest who has had more organs removed than are remaining, or the other 1.5 million non-famous Americans living with both visible and invisible diseases. Yes, there are some cases of blatant abuse, but time and time again we see that the majority of people using government benefits are legitimately in need. There are kids who depend on WIC because mom and dad can't find a job in podunk, middle of the country. We have people who rely on unemployment benefits because their town is bankrupt. There are so many more people that use and need these benefits that it surely outweighs the stereotypes, right?

Wrong. According to what I understood from the brief interview - please note this is my personal opinion - was that we, the American people, expect too much from our government - we have infantilized an entire generation of people. "If you are a drug addict or an alcoholic, you should not be subsidized by the government. Some have bad backs, some have carpal tunnel, some have lupus. I have a daughter in law with lupus. Sometimes she can't get out of bed and sometimes it's debilitating, but most days she gets up and does what she has to do."

I'm not a stenographer or even very good at typing down what I hear anymore, so forgive any misquotes. The first time I heard it, it seemed innocuous at first, but the more I listened, the more enraged I got. I'm not a drug addict or an alcoholic, nor should any of the diseases be lumped in together with alcoholism and drug abuse. These are very real diseases, but at no point did I say, "hey, I want to do something harmful to my body that might mess me up for life." I woke up one day and I had this disease which has morphed into several, life altering diseases, and there is no getting off this train wreck.

The thing is, as I listened to her comments, I felt a feeling that has been lingering for the last year. I feel ashamed. A year ago, I was working full time, I had a social life, my husband and I were living in a prime spot in LA. Sometime around December 2012, I started to slow down. I couldn't make it through a full day of work. I felt horrible. A month later, my life changed when I had an adverse reaction to a medication I was taking and ended up in the hospital. It was the first of many times this year. Shortly after this hospital stay, it was clear that I couldn't go back to work. My level of functioning was decreasing almost daily.

I cried. A lot. I tried to put on a brave face and looked at this as a temporary setback, so I applied for state disability insurance. After all, I had insurance to pay for and a roof to help keep over our heads. I have been a recipient of state disability since approximately February. It keeps me stocked in my close to $400 in monthly medications, and it pays for my twice-a-month infusions of chemotherapy and all the copays for the ten-plus specialists I see on a regular basis.

Despite knowing that these benefits have been instrumental in my life, despite the fact that at 33 years old I worked almost 20 years (yes, you read that right. I was an overachiever), and that I paid into the system under the belief of personal responsibility, I am ashamed.

I worry what people think about me. You can't see my illnesses, other than the fact that the steroids I'm on make me fat. I look like your average housewife (I think my love of yoga pants did that) who runs to the supermarket, appointments, etc, but parks in the handicapped spot. What you don't see is that I have a heart condition that makes walking long distances difficult, and that shortness of breath and trouble breathing are a side effect of chemo. You don't see that my stomach is in constant pain, and that my colon has been attacked by the lupus, and there is a chance I could end up in the hospital at some point with no real warning, like the last time. You don't see that I can't wear my contacts anymore because I have a disease that dries out my eyes and mouth. You don't see how much it physically hurts to walk up and down the stairs to my apartment. You can't hear the frustration in people's voices when I can't remember what they said five minutes earlier.

I am ashamed of what you think of me. I joke around and talk about how nice it is to not have to wake up at 6am every day, but 3-4 times a week I'm up at that time to drive to my doctors. I am ashamed that people think I'm just hanging out and watching TV.

Yes, I knit. I draw, I write, I paint rocks, I work self-help books. I'm catching up on tv series that I never had time to watch because I was always working. I read NY times best sellers. BECAUSE I AM BORED. I am not used to ever having this much free time on my hands. I have a masters degree that I got because I was bored. When I graduated and got my undergraduate degree, I made the conscious decision to go into a field - community organizing - that I knew wouldn't pay well but was satisfying on so many levels. I never expected anyone to take care of me, and I was okay not making a ton of money. I wanted to make a difference. And I did for a number of years.

A year ago, I was running in full swing, working 9-10 hour days, a minimum of six days a week. It was our busy season, and I loved it. And now, I sit here ashamed.

I am ashamed because people think I am fat because I eat a ton. Actually, because of my colon, most food makes me incredibly nauseous, and I'm absorbing almost no nutrients so anything I eat is sort of a moot point. I am ashamed because people think I am lazy. I am ashamed that people think I'm a flake when my husband and I cancel plans because I had a sudden lupus attack. I am ashamed that my depression led me into self-imposed isolation. I am ashamed that last year I was on such a high dose of steroids that it caused me to become an insulin-dependent diabetic. I'd never had issues with my blood sugar before then. I am ashamed that I can't even manage to do most of the housework and my amazing husband has been holding down the fort for way longer than I give him credit. I am ashamed that I am now too tired after typing this blog to drive to my appointment and I'm seriously considering canceling. I'm ashamed that I just had a mini-argument with my husband who is making me go to the appointment and I can't in my mind justify taking a cab for 25 miles for a one hour appointment.

I am ashamed that I am ashamed. And until people get it, I'll likely continue to feel ashamed for something that should not come with shame. I wouldn't feel this way if I had any of the big diseases, but I am ashamed that lupus has temporarily gotten the better of me. And I will continue to be ashamed until the stigma is gone. Erin is doing a great job fighting the good fight as always. Moveon.org has a petition circulating that I hope you'll sign. The Lupus Foundation of America gave a great response to the interview. It's getting picked up by social media, Erin's letter went viral, and people are starting to talk about it. For the 1.5 million Americans with lupus, I hope this is enough to start the conversation about this invisible and debilitating disease. I hope it's enough to start to erase the stigma. I'm hoping it's in my lifetime.

Until then, I'm going to take my fat, lazy, diabetic, gubment using, no-responsibility self to my doctor's appointment in shame. Because you don't see what I see. And I hope you don't judge me too harshly.






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