Letting Life with Lupus Out of the Bag

Here I am, the face of people living life (and doing pretty well) with Lupus.

Here I am, the face of people living life (and doing pretty well) with Lupus.

Well folks, I told the whole world that I have Lupus today.

New Republic Magazine just posted an article that tells the story of how I was able to start my own business and live a healthy happy life because of Obama Care gave me the option of buying my own insurance coverage. Here is how it all unfolded…

In January, I wrote a letter to the President. It was mainly to thank him for pursuing the Affordable Care Act (ACA, or “Obama Care”) even though the fight was hard.

So, I sent my letter and a short time later, I was talking to the Deputy Press Secretary at the White House, and then, Jonathan Cohn from New Republic. Over a few weeks I told him about how Lupus impacts my life, and how having “Obama Care” options instead of using COBRA, I was saving hundreds of dollars a month on healthcare. And this is above and beyond the fact that I couldn’t even buy individual coverage before this law as passed because Lupus is a preexisting condition. I had a moment’s hesitation about being a part of this story, but I felt strongly about it, and I believe that we need to speak out when things matter.  So, I spoke.

The article by Jonathan Cohn,  “How Obamacare is Slashing those COBRA Premiums”, was posted to the New Republic website today.

I am feeling a bit vulnerable about this—I am a pretty private person–my friend Laurel always jokes that I feel vulnerable when someone asks me my middle name (note: I did not share my middle name here). I had a knot in my stomach that being a part of this story and sharing my illness with the world would be a career limiting decision, but I am hoping people get the message: there is no impact to my clients now, because they aren’t responsible for my healthcare coverage, and managing my own schedule (more or less) means I am, in fact, healthy.

Either way, I had to wave my flag and tell my story. The Affordable Care act gives me the flexibility to pursue the life I want. What is more American than that?

So, here is the letter I wrote to the President.

January 6, 2014

Dear Mr. President,

In 2008 I was diagnosed with the autoimmune disease, Lupus. It took five years of medical tests to get this diagnosis. It takes a team of doctors, several prescription drugs and constant vigilance on my part to remain healthy enough to get through days and embrace life. Before the Affordable Healthcare Act became law lupus disqualified me from getting healthcare coverage, unless it was through an employer. This letter is not about my illness—it is to say thank you to you for taking on healthcare and for continuing under fire to keep it from slipping away. When I called the HealthCare.gov 800 number the operator let me know my online application had been deleted from the system. She took fifteen minutes to walk me through the process again. It was that simple. When she offered me options for health coverage I chose one. The operator said I was “all set.” I was almost in tears when she clarified that I just needed to pay my premium I was covered. And at a level and premium I could afford.

In July I started my own business, and I was only able to do that because of the Affordable Healthcare Act. To make this happen I had to take a leap of faith; I had to pay for COBRA coverage from my last employer for six months and believe in the promise of “Obama Care.” This month, that leap paid off through the new healthcare plan I was able to find though the exchange and purchase through Kaiser Permanente. Until this point, Lupus disqualified me from getting healthcare coverage, unless it was through an employer. My new plan will provide better coverage and will save me $200 per month. Having it also gives me the peace of mind that my healthcare coverage follows me despite my chronic illness. It has freed me to start my own business that creates the lifestyle that keeps me healthy and working—and not disabled.

I take every opportunity to tell people in my life what the Affordable Health Care Law has done for me and to dispel any misconceptions. I think there needs to be more talk about the option of calling the healthcare.gov 800 number when the website is criticized. If there is a need to share a positive experience with the exchange and the law, please use my story any way that it can be helpful. I hope the depth of my thanks multiplied by the many lives that this law impacted will give you even more inspiration to carry on the work you are doing.

With Deep Respect & Profound Gratitude,

And you can click here to read the article at New Republic magazine.

I hope you are having a healthy, empowered day… and that you will leave a comment and let me know what you think.

Donielle

 

 

2 thoughts on “Letting Life with Lupus Out of the Bag

  1. Very inspiring! I knew there were difficulties with affordable illnesses in USA, and didn’t realise it was bad until I looked at visiting there and realised I couldn’t even do that. I admire ho far you have come and how much you will now be able to achieve. Good luck with your new business!

    • Thanks, Jessie! Healthcare is something we just haven’t gotten right yet. Did you know that until this year people couldn’t even buy coverage (at any price) if they had a or existing condition? We had to get it through an employer or not have it at all.

      The new law helps and there are more pieces of it rolling put over the next few years.

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