Today I had the unique experience of sitting with a U.S. Census Bureau employee, participating in the SIPP survey—the Survey of Income and Program Participation. It wasn’t something I wanted to do, but it’s something I needed to do because I was called on as a U.S. citizen to participate in this four-year-long project.
The answers I provide help the Census Bureau analyze how we use our income to pay for things like utilities and food; how we spend our money on healthcare; how illness can impact our ability to work; and many more important questions.
The two-hour interview left me emotionally exhausted. While I’m very proud of my successful business and enjoyed sharing details about some of the highest income I’ve ever earned (2013 ROCKED professionally!), it was very difficult to outline in detail what I spend on medical expenses, and how my health impacts my earning abilities.
As I sat across from the surveyor, I checked my records and confirmed that I had more than 75 doctor appointments last year. That the amount I spent out of pocket for healthcare costs was more than 20% of my net income. That while it was typical for me (a self-employed gal) to spend 50 hours a week working, I also had periods at least once a week when I couldn’t get out of bed or work for half a day.
The big picture? That I work more hours than most people I know; that I pay more for healthcare than most people I’m friends with; that while my income was high last year, I still struggled to make it because of high debt that I’m slowly chipping away at; that I spend time every week not being able to work; that I sometimes need help doing basic household tasks like laundry and shopping… This is a difficult thing to look at.
I reached out for support.
These are traits, experiences, that I move in and out of every day. But it’s not often that I summarize them for a complete stranger in such stark, black-and-white statistics. And it made me extremely sad. I texted my boyfriend, who was amazeballs. (I hope you’re seeking out strong sources of support in your life, too!)
He had helpful things to say, mainly that by talking frankly about this experience, I am helping to make it less invisible. By telling a complete story about how chronic illness impacts us, we help others understand its reality.
And we help diminish the stigma. The Census Bureau employee seemed surprised that I had times in my day when I couldn’t perform normal tasks, or that I worked so many hours despite needing so much downtime; that I could earn as much as I did while also being so limited. And of course, the classic, “I don’t look sick.” And she was so apologetic, which was nice and sweet, but such a bummer.
I don’t want apologies.
I don’t want pity. I want people to understand that chronic illness takes a massive toll, that it costs our community billions of dollars in lost productivity and divorce and poverty every year. I want people to understand that every time I talk about being sick, it’s not a cop-out on life. It’s not weakness. It’s real. And it has real consequences. And as a ChronicBabe, I kick ASS on those consequences every day.
How can you help continue this conversation?
By telling your story. I would love to hear some of the details of your life: How do you balance work, family and self-care? How much are you saving (or increasing) on healthcare costs this year, now that the Affordable Care Act is in full effect?
Please share your stories in the comments section below. I’m really looking forward to learning more about your experience. And I could use a little emotional boost, just to remind myself that I’m not alone, that I can keep going, and that we can all help each other.
Thanks for listening, thanks for being part of this advocacy community, and thanks for being amazing ChronicBabes! XO