Under the Senate’s latest health care bill, my caregivers are at risk of losing their jobs. And if they lose their jobs, my life will be at risk.

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Six years ago, I was diagnosed with a multi-system disease—myalgic encephalomyelitis, or chronic fatigue syndrome—that inhibits my body’s metabolic system. Although the disease differs from person to person, my condition has been degenerative over the years; for more than a year starting in 2015, it left me unable to speak, eat, or lift my head higher than a pillow.

This is the type of physical debilitation that requires a caregiver.

For the past two years I’ve been completely bedridden, and I’ve hired numerous caregivers to perform myriad tasks for me. They have administered my daily oral medications and flushed my IV with syringes full of saline and heparin. They bring me my toothbrush every morning, and they help me go to “the bathroom” by emptying a plastic urinal beside my bed. They help me bathe by placing a flattened inflatable bathtub on my bed, which I scoot onto so they can inflate it around my body. They fill the tub with water so I can clean myself, then they drain it, I towel off, and they deflate the tub so I can crawl out.

These tasks are essential to my health, and I depend on my caregivers to help me perform them. But the stark reality is that I simply couldn’t afford to employ caregivers without Medicaid.

I receive around 48 hours of paid caregiving every week through California’s In-Home Supportive Services (IHSS), which gets half its funding from the federal government. For the 48 hours a week they cumulatively work, my caregivers are paid California’s minimum wage: $10.50 per hour. Because I believe that is an unfair wage for such a demanding job, I supplement their pay as much as I can —usually an extra two dollars an hour.

Under the Senate health care bill, Medicaid would face massive cuts—up to $772 billion by 2026. Combined with the House budget, which was released earlier this week, those cuts would jump to $1.5 trillion. That would almost certainly cause dramatic reductions to caregiving services in California, as well as every other state in the country. But these cuts will not only impact patients; they will take a toll on the caregiving field and other industries related to health care.

“Caregiver” is an umbrella term that includes several job titles, such as personal care aides and home health aides. These positions account for millions of jobs, and past projections have estimated as much as 38 percent growth in some fields by 2024. But since Medicaid is the largest public payer of long-term caregiving services, the cuts outlined in the BCRA could end up eliminating their jobs, along with others in health care and the broader economy. The Center for American Progress has estimated that the House version of the health care bill—which is substantially similar to the Senate bill—would cost the American workforce 1.8 million jobs by 2022.

Each one of those jobs has dozens of lives attached to it and is part of a vital social equation that nobody should reduce. Not only are jobs and livelihoods at stake, but so is the health of millions of people. Cuts to vital services like Medicaid, Supplemental Security Income, and IHSS will tear down decades of efforts to protect and nurture the working poor, sick people, the elderly, and the disabled.

Instead of giving me the help I need to live and potentially improve my health enough that I can once again contribute to the economy, this bill would put my life in an incredibly vulnerable position. It would also take jobs away from health care professionals like my caregivers. This may be acceptable to some, but to the many millions of people whose fates hang in the balance, it’s entirely unacceptable.

For more than a year I was unable to speak, sit up, or eat solid food. In June 2015, first responders wheeled me into the emergency room, too weak to eat, drink, or elevate my head. I had been, essentially, waiting to die of dehydration. Besides administering some much-needed fluids, doctors offered little help.

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I have among the most severe cases of chronic fatigue syndrome (sometimes known as myalgic encephalomyelitis, or ME). It’s a devastating multi-system disease that’s been given a patronizing name. The cause is still unknown, which makes getting a proper diagnosis—often necessary for insurance and disability coverage—near impossible.

When I was released from the hospital in 2015, my family learned that California’s state-administered Medicaid health care program, Medi-Cal, would not cover the ambulance ride to transport me home because none of my conditions were considered “legitimate.” I took the ambulance anyway, and paid around $1,500 for the ride out-of-pocket.

Several months later, I became so dehydrated that my family decided to pay more than $150 a day for a nurse to come to our house to administer intravenous saline to keep me alive. Large doses of intravenous saline were, and still are, the only way to keep my body functioning.

My medical care has become a privilege that costs me more than $1,200 a month. In the last year, I spent roughly $73,000 on my health care—more than double my annual income when I was healthy and working full-time.

Historically, the National Institutes of Health (NIH), has allotted only a paltry amount of attention and funding—$6 million—to ME research. Some headway has been made in recent years, at least in part because advocacy through the #MillionsMissing campaign has brought the lack of funding to legislators’ attention. In November 2016, the NIH tentatively announced plans to increase research funding for ME to roughly $15 million for fiscal year 2017. But now, with Republicans controlling both Congress and the White House, there has been a change in what was promised. In January the NIH said it will actually decrease funding, allotting $1 million less than in 2016.

The amount is minuscule compared to the funds that the government has at its disposal. The ME community has needed a substantial increase in government funding for decades. More funding would mean more research; more research would mean more biomarkers; and more biomarkers would mean the potential for a diagnostic test. These scientific breakthroughs would mean medical professionals would be able to better understand the disease—and therein lies the solution. This path has potential for the medical establishment and government to compensate for decades of belittling patients who suffer from a devastating disease, finally bringing widespread legitimacy to ME—and relief to millions of patients. That would be real progress.

But it may never happen at all.

Before Donald Trump shocked the world by winning the election, I was hopeful that the Affordable Care Act (ACA) would, in time, be expanded so that more of my medical needs would be covered by insurance. But now, barring a radical turn of events, that seems—at best—highly unlikely.

If the Trump Administration repeals the ACA, even simple treatments—like saline infusions and in-home nurse and doctor visits—will cost egregious amounts of money. My savings account has been zeroed-out, and I receive less than $900 in monthly disability checks. For the past year, my medical expenses alone have been more than $6,000 a month.

The plans that have been floated to replace the ACA do little for people with disabilities or low incomes. A replacement would likely offer a flat credit based on age, and it wouldn’t cover the care I need.  It would also dramatically weaken Medicaid, decimating services for people with disabilities and serious illnesses.

It would be unfair to say that the ACA has no room for improvement. But for me—and I imagine for most poor, chronically ill people—it is something to build on, not something to dismantle.

Because what happens next, for us, could be a matter of life or death.