An Open Letter to Judge Judy Sheindlin

Your Honor,

I just watched your interview on Fox News which aired on October 11, 2013. You also mentioned you don’t read negative mail, so my guess is you may never see this…however my hope is that many will be educated regardless.

First of all my love goes out to your daughter-in-law with Lupus. As you rightly stated, some days I’m sure she can get out of bed and go about her day and others it’s debilitating.

Debilitating was the word you used, not me.

Then you went on to say how (and I’m paraphrasing) we’ve created a society where drug addicts and those with bad backs and those like your daughter-in-law are told ‘not to worry, if you can’t take of yourself we’ll take care of you.’

Apparently in the world of personal responsibility and your new book that you are shilling, you think the government shouldn’t be helping those with debilitating auto-immune disorders. Ones they didn’t ask for, nor did they contract by some irresponsible action of their own.

As someone with a family member with Lupus I would hope that you would be better educated on exactly how it works, but by the way you spoke on television I was unclear. Especially considering you seemed to think Lupus was not a disorder that could possibly render one disabled to the point of needing government assistance. This may be the case for your daughter-in-law. It may be the case for many others with Lupus in varying degrees. However, Lupus is a killer and as you said, debilitating.

It destroys organs.

It causes organ failure.

It causes strokes.

It attacks your own body and causes so much pain you can not get out of bed, shampoo your own hair, or even tie your own shoes.

But here is the real kicker: Lupus is different for everyone. It does not attack one body the same way, because hey…we are all different.

From the Lupus Foundation of America:

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

In my own body, Lupus is currently attacking my blood vessels causing them to be inflamed. As you can imagine this causes much pain from head to toe. We also just found out I have the beginning stages of glaucoma thanks to Lupus. Previously Lupus has caused me to have a stroke, two TIAs, lose my gallbladder, lose part of my colon, lose my uterus, my ovaries, and my cervix.

I undergo bi-weekly treatment via IV infusions three days a week, for 4-6 hours per day. Those are on the weeks I’m just getting my ‘regular’ treatment. Every four months or so I get two extra treatments of a super powerful drug via another IV infusion.

I am on powerful steroids and many other medications that have serious side effects. Some days I’m not sure which is worse, the disorder or the treatment.

As you can imagine, this doesn’t exactly make it easy to work. Which is why I am thankful that in our country, when I was capable of working, I paid into social security as well as private insurance disability benefits. I thought that was also called personal responsibility. According to you, though, I’m avoiding personal responsibility.

I worked as hard as I could for as long as I could, making sure we had savings, and even reaching out to family for help. Then medical debt took over and now we’re doing what many Americans do: paying our bills, living paycheck to paycheck, and thanking all the deities for Obamacare (which as you correctly noted is law) as it will help my family get through this rough time. As someone who makes millions per year and was named to Forbe’s list of highest paid entertainers, I don’t expect you to understand the needs to the average American family. I do, however, expect you to retain compassion regardless of the size of your bank account.

Now I’m not exactly sure why you felt the need to single out Lupus patients as being irresponsible for their disability simply because they follow the law and take out the money they put into these government programs. Lupus patients are already stigmatized enough as it is with so little money having been put into research and educating the public on the pain and suffering we experience.

Our pain is real. Our suffering is real. You are welcome to see my brain MRI showing the stroke, the doctor’s notes and files regarding the inflammation so pervasive in my pelvis the doctor couldn’t believe anything was left and most of all, I’d love for you to talk to my family. Please, sit down with my children, my husband and hear from them the toll it’s taken.

Just as you don’t want to ‘pay for my kids’ I certainly do not want to be sick and out of work. It’s the LAST place anyone with Lupus wishes to be. Shame on you for insinuating we are mere moochers or freeloaders not taking responsibility for ourselves.

I’d give anything to be back at work and healthy. I’d give anything to have my organs inside my body and my brain functioning as it was before the stroke. Lupus is no joke and those with Lupus deserve your praise, not your scorn. We wake up every morning and fight to live. We fight against the odds. I know Lupus patients who are heroes.

As someone who is sworn to uphold the law perhaps you have seen only the law breakers from your bench. Perhaps you have spent so many years handing down sentences to those who try and take advantage of the law that you have forgotten the majority of people are not looking to lie, cheat, and steal their way through life.

Some are just simply hoping to live.

I’m glad there is a safety net for citizens of this great country and I believe we are a great country because we can provide that safety net. You may not like your tax dollars going to me or my family, but I don’t like my tax dollars going to wars I don’t agree with. It is a give and take. I, for one, am much happier giving to those in need.

And let me be clear: those with Lupus may truly be in need. The next time I can’t get out of bed, I will think of you and how you said I was undeserving. The next time yet another doctor gives me yet another diagnosis (last week it was glaucoma) caused by Lupus I will think of you, and how you said I was undeserving. The next time I’m in the hospital by doctor’s orders even though I want nothing more than to go home and be with my family, I will think of you and how you said I was undeserving.

Please educate yourself further on Lupus and perhaps offer your daughter-in-law even more help on those bad days when she can’t manage. Because we hope you never know the pain she and I are feeling on those days and how we’d love nothing more than to be at work instead.

In the meantime, I will proudly collect the disability I worked hard to contribute to and I will proudly stand up for Lupus patients – all 1.5 million of us in the US alone – as they collect their checks as well. Because as you said  ‘not to worry, if you can’t take of yourself we’ll take care of you.’

I don’t want Lupus patients to worry and I WILL help take care of them. THAT is the mark of an incredible nation that puts its people first.

Sincerely,

 

Erin Kotecki Vest

There is a Move On Petition asking Judge Judy to apologize for her remarks regarding Lupus. 

 

Comments

  1. Just because you can’t see a disability doesn’t make it any less a disability. This is a well written letter, Erin. I wish you the very best. (I signed the petition as well.) Please let me know if I can help you in any way.

  2. Diane Elhard says:

    So sad that she took the opportunity she had to speak intelligently and with support for Lupus sufferers that she chose instead to speak the language of we-don’t-care-speak.
    Such a shame for a woman of her position not to use that position for good and instead to use it to spread hatred.

    I signed the petition and fully support your letter, Erin. Good for you!

    Diane

  3. Truly an eloquent and thoughtful open letter. This is the best response to her remarks that I have read so far. I have had very similar experiences with my disease process and hope this post finds you having a “goog” day.

  4. Sorry – good day!

  5. This was very well written and shows many the “REAL” issues that come with having being diagnosed with lupus. It is sad, if not discomforting, when others shy away from understanding an illness by attacking only what “they know” from the outside. Many of us know, from personal experience, that those who see without understanding or experiencing will have opinions that are distorted and misinterpreted. I believe we all know, quite well, that each affliction has a way of its own. We have to educate and not discriminate based on a few imperfect words.

    This reaction from a well-educated, well-known, respected and ‘experienced’ person, confirms that too many in our nation are unfamiliar with lupus and its impact on the quality of life. We must continue to listen, share, research, learn, participate, and to motivate others to come to the conclusion that LUPUS is indeed real. And it will be, until ‘WE‘ find a cure. ~TheLupusLiar.com

  6. James Conner says:

    Thank you for sharing your experience. Please remember not all people are as ignorant or as caustic as the “Judge”. My thoughts will be with you.

  7. Brendazzle* says:

    Reading through these comments has made me happy. It’s nice to be reminded we’re not alone.

    I’m working to get diagnosed with what we think is fibromyalgia; all I know is that it’s hell. I consider myself LUCKY because I have a doctor who wants to work *with* me to find a way to make my life bearable, without or without a diagnosis. I consider myself LUCKY because I have a boss who tells me “when in doubt, go home” and asked me to bring in paperwork from my doctor verifying I am being treatment so that I a) can’t be fired and b) my amazing supervisor can justify making accommodations like buying me an ergonomic chair. I consider myself LUCKY that my (newly minted) husband plans activities around my physical limitations so I can enjoy myself without suffering for it. (We did 2 days at Disney for our honeymoon; I spent the next week unable to get out of bed and won’t make that mistake again.) I consider myself LUCKY that at 25, I can stay on my father’s health insurance until the coverage from the Affordable Care Act kicks in.

    I wish people like Judge Judy could walk in my shoes and realize how hard it is; my fellow commenters do. I FIGHT to keep my job and my happiness and my life intact in part because of you, Erin. But it’s depressing to crunch the numbers and realize I *have* to keep working because a monthly disability check wouldn’t cover my monthly student loan payments and my share of rent, let alone any other expenses I might have. It sucks to have to choose between showing up for work and doing what I need to keep my body from aching. It sucks that I had to give up blogging because it was just too hard to keep shooting, editing and posting. And it sucks more than ever when people look at me and say “you don’t look sick” or something of that nature as I am two steps away from collapsing to the ground.

    I think it would be quite lovely to see another tv judge take on a case of a chronically ill person vs. a detractor and rule in favor of the chronically ill person. Anyone want to start a case?

  8. pamela collins jester says:

    I cannot stand her! Period! RUDE!

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