Facing Chronic Illness Takes More Than A Soul Mate
By Erin Kotecki Vest on June 07, 2012
The Romney campaign is out with a new ad talking about Ann Romney's Multiple Sclerosis diagnosis and her "soul mate" Mitt's reaction and subsequent handling of her chronic illness.
Their children weigh in. There is a link to donate to the National Multiple Sclerosis Society and for those of us like Ann, with chronic auto-immune diseases, it's all very touching and nice.
Unfortunately it doesn't say a word about what "President" Romney would do for people like Ann and I. Not one. Single. Word.
Since Mitt isn't my soul mate I'm going to guess he won't be there to hold my hand or see me through to the other side. Or to make sure he'll stand by me since I too can't do the things I once did.
Tea was exhausting.
My husband has done the same as Mitt Romney thus far, but he's not running for President. So as of right now, Aaron has done just as much for me (politically) if not more than Mitt Romney.
What we do know is candidate Mitt would repeal the Affordable Care Act -- the groundbreaking legislation that would make sure my and Ann's disease would not mean we&'d lose our insurance coverage, or making sure there is an end to lifetime limits of benefits.
I'm sure Ann and Mitt understand how expensive a chronic auto-immune disorder is -- right? They know that those of us who have worked (be it as stay-at-home moms or in the traditional work force -- I have done both) now can not bring home that paycheck. They get that, right? I mean -- what with this sweet video showing me their love, they surely understand how hard it is financially.
My doctor has told me I have a choice: I can go back to work and get sicker, lose more organs and potentially my life -- or I can accept that my illness has rendered me disabled and become content with taking care of my young children as best I can while receiving IV infusions several times per month.
I want to be with @aaronvest and my kiddo but asshat lupus has me doing this.
Ann and Mitt get that, I am sure -- because they live it. I mean, that's what the video tells me. Certainly they understand the loss of my paycheck because of my disease has been a terrible burden on my family. And certainly they understand, given Ann's condition, that the medical bills piling up (with our very good insurance) and the loss of income means families like ours need things like long-term disability programs -- be they social security or private insurance through our former jobs.
They SURELY understand that, right? So Mitt would CERTAINLY, given his love of his soul mate and total understanding for what a chronic auto-immune disease does to a family, endorse what the National MS Society endorses in Obamacare -- right? Because he and Ann GET IT. They GET how hard it is. They GET how much we suffer. THEY GET IT -- because their new VIDEO TELLS ME SO.
Oh wait. The new video doesn't say that. So let's try and figure out what Mitt would do... since he understands.
As it turns out his ideas for health care would leave people like Ann and I out in the cold. Compared with the Affordable Care Act, Romney's plan would leave millions of people dropped from their employer plans. Wow. What a plan for his soul mate and those of us like her! How ... caring?
I applaud the Romney campaign for releasing a campaign video giving people information on how to donate to an auto-immune disease organization that endorsed Obamacare. But I would clap a whole lot louder if the candidate himself would stand up for people like his wife and myself and support policies that wouldn't leave us on the street.
Perhaps the Romneys don't understand because they live in a different world than the rest of us. The one where it actually matters if your spouse loses her paycheck and has to fight to get disability (my fight is going on eight months now) in order to pay the mortgage.
You see Mitt and Ann, after Aaron and I cried together at my diagnosis, and did the same things you two did -- we then had to do something else: we had to figure out how in the hell we were going to keep a roof over our heads and food in the mouths of our children and ourselves. Not to mention the thousands upon thousands of dollars in medical costs for my treatment.
So you can take your new ad and get all teary while viewing it in your screening room at your ocean-view mansion with its car elevators, while we continue to fight for my disability payments and send in paperwork and documentation to hopefully be approved for a home loan modification. A part of the process you seem to leave out of that touching video.
You also seem to leave out how a chronic illness financially destroys a family, bankrupts millions, leaves many of us wondering how in the hell we are going to pay for treatment and the bills. If I sound a bit upset, it's because I am. Your video just slapped me in the face, hard.
Do not relive with me and my family how hard it is to get a devastating diagnosis and show me what a stand-up husband you are and then offer me NOTHING about what you would do as President for those of us like you and your soul mate.
That's why we will be fighting for President Obama who has actually outlined and enacted policies endorsed by not only the charity you promote at the end of that video, but almost every other auto-immune organization in existence. Because his policies will HELP families like mine.
It takes more than a soul mate to get through multiple sclerosis or lupus or rheumatoid arthritis. For those of us fighting the battle, like Ann, it is a daily struggle you seem to not fully grasp.
I'm sure glad President Obama does.
Erin Kotecki-Vest is currently disabled due to lupus. But normally she's helping BlogHer make the most impact in the quickly-evolving new media landscape. Erin also served as BlogHer's Political Director throughout the seminal 2008 election cycle and beyond, connecting community members directly to legislators and policy-makers. She blogs at Queen of Spain, where this post first appeared.
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