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My Problem With Kellyanne Conway's Claim That There Are 'Other Options' to Medicaid

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Last night, I was awake until 3 a.m. My supportive and hardworking husband lay sleeping next to me, softly snoring, while I scrolled through the news from the day and Facebook. And then, anger and sadness cut through the full-body musculoskeletal pain keeping me up: Kellyanne Conway.

On June 25, Conway responded to concerns about people losing Medicare/Medicaid coverage. On ABC’s “This Week,” she said, “If they are able-bodied and they want to work, then they’ll have employer-sponsored benefits like you and I do.” According to her, those of us in the chronically ill community who may lose coverage can simply get jobs or find “other options.”

Respectfully, Ms. Conway, you don’t seem to know what you’re talking about.

According to the Kaiser Family Foundation, most people receiving coverage from Medicaid — about 80 percent — are in working families. Many of us have jobs. The problem is most of us aren’t physically or mentally able to maintain employment in positions that allow us to afford the expensive medications and treatment we need to continue working. If it gets bad enough, we may have to try to work from home, which becomes a daily hustle to find freelance work or positions we can fulfill remotely.

She suggested a second option: find other options. The issue: there are very few, if any, other options. It’s difficult enough already to receive government assistance. To say there are other options we should look is to is to show an uninformed and naive understanding of what it actually means to be chronically ill.

As a 22-year-old, I started feeling pain. Like many 22-year-olds, I brushed it off and assumed I was simply stretched too thin. The pain continued then came all at once. My whole body felt like it was on fire. My muscles screamed; my bones ached as though they wanted to split like old wood; my joints felt like square pegs in round holes, like they didn’t fit but were being forced together. My body — once carrying me on 60-mile backpacking trips, holding three jobs at a time, going to school, enjoying my young adulthood — officially went on strike.

Since that first storm of symptoms, I have visited dozens of doctors, taken dozens of medications, and barely been able to hold down a job. I have a diagnosis, but it doesn’t fit what’s going on or how my disease is progressing. Now doctors are just waiting out the clock for blood markers to finally show up in my blood. I spend around $2,000 per year on medications after what insurance pays. For insurance premiums through a job and doctor visits and tests and treatments, it’s an additional $3,000-$4,000, assuming I don’t visit the emergency room or require surgery. Any additional tests, MRIs, X-rays, etc., can make the total yearly cost skyrocket.

The ringer: I can’t physically work full time. Sure, I can do it for a couple weeks at a time, but there are months I only work maybe 1.5 or two weeks. My physical exhaustion, my full-body pain, my rolling insomnia, it all makes it nearly impossible to work full time in an office. Being on immunosuppressants hasn’t helped. Now, I am a sponge for any illness that is tracked into the office. And once I’m sick, it’s not a few days of having a cold; I end up in bed for a week or more.

It’s expensive. Anytime a person requires constant medical care, it becomes expensive quickly. It’s a drain physically, emotionally, mentally, spiritually. I tried two separate times to receive Social Security disability services and was denied both times because of my inaccurate placeholder of a diagnosis and age. The fallacy that large groups of people are feigning illness to receive free benefits seems impossible to me. Both applications for government assistance resulted in a handful of appointments with third-party doctors I’d never met and hundreds of pages of paperwork. I searched for other options: I found none. Nothing that could help for the long run. I’m sure there are foundations and groups willing to help and donate small amounts to assist with the high yearly costs of simply living, but I couldn’t find a single one I qualified for.

Aside from the actual day-to-day struggle of living chronically ill, we now have politicians deciding things that will affect many lives, yet these are politicians that often don’t seem to understand what the actual results will be. The only option we have is to speak out, to try and educate them.

I am angry. I’m angry I’m sick; I’m angry my husband has to deal with it; I’m angry I have to fight so hard to simply continue existing. But mostly, I’m angry our fate is being decided by people who don’t seem to know what our days are like.

After reading the articles about Conway’s comments, I still stayed awake. It was not by choice. It was my thumb tingling and going numb, my legs aching, my head pounding, my bones and joints rubbing each other raw, grinding on every nerve. I stay up late, sometimes until the early morning, because of lack of coverage and no feasible way to acquire it. Kellyanne Conway, this is what happens when there’s a loss of coverage. What will you do for us?

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Photo by Gage Skidmore via Flickr