I woke up on a Monday with tingling hands and numb feet, my legs too weak to climb stairs without a struggle. I spent most of Tuesday in a red recliner with a plastic tube stuck inside a vein in the back of my hand, waiting while a drug made from other people’s blood plasma dripped into my body.

On Wednesday, nauseous from the chemicals coursing in my veins, I caught up on a debate between candidates running for US Senate in Montana, the state where I buy health insurance.

A journalist grilled the Republican, state insurance commissioner Matt Rosendale, about whether he would give his own family one of the controversial, low-quality insurance policies he recently allowed back on the market. He ducked the question and gave a vague answer about protecting sick people, with no details on how to do that.

His opponent, incumbent Democrat senator Jon Tester, told a story of how, when he lost his fingers in a meat grinder as a kid, his family’s junk insurance plan – the kind Rosendale allowed – failed to pay for anything.

“We bought this insurance to have when we needed it. And when we needed it, it wasn’t there,” said Tester.

I paused and did the math for the millionth time.

The medication clouding my brain and quieting my immune system cost $7,348.03 this week. I will probably have 10 infusions this year. Last year, the treatment cost almost half as much, but I switched insurance companies and the price soared.

I changed companies because in less than two years, my monthly premiums had doubled to nearly $1,000 a month. My new insurance is cheaper for me, but the real price tag went up. This shell game – the ever-increasing cost of health insurance to consumers to satisfy profit margins – is part of what used to make it so easy for elected officials to undermine the law.

Whether it’s $40,000 or $73,348 a year, the price is far outside my budget. Without health insurance, I will be bankrupt or disabled, likely some ugly combination of both.

The medication quieting my immune system cost $7,348.03 this week. I will probably have 10 infusions this year

For 20 years, this illness, a rare disease in which my own immune system attacks healthy nerves, has ruled my life. I rarely talk about it and if you met me, you would never know. With medication, it’s manageable – but the near-unmanageable thing has always been navigating it without the right to medical treatment that most of the developed world takes for granted.

But while the illness itself dictates some of the terms of my life, the looming threat of losing insurance has always been for me the bigger obstacle.

Throughout my 30s, every major decision – whether to change jobs, whether to move, where to live – revolved around not losing health insurance. Losing my insurance, even in the years when the disease goes into remission, would mean eventual ruin for my health and finances.

I am a living, breathing, expensive pre-existing condition, the one who jacks up other people’s insurance rates, the one who makes it difficult for insurance companies to profit on healthcare. Yet profit they do.

Activists protest at Trump International Hotel and Tower to fight against the radical changes to the American healthcare system. Photograph: Eric/PacificPress/BarcroftImages

I’m not as alone as I once believed. According to the government’s own data, as many as half of all non-elderly Americans have a medical malady that insurance companies consider a pre-existing condition, somewhere between 52 million and 119 million people. Before the Affordable Care Act, we could be denied insurance, or have specific illnesses rejected for coverage.

We were also more broke before we had the right to buy health insurance. In the years since Americans gained a foothold in healthcare, personal bankruptcies dropped by half.

Countless polls show healthcare is a critical issue in this election and in some races, like Tester v Rosendale, it could be a deciding factor. The political party now in charge of American government appears to have decided that ignoring questions and obscuring plans is the way to win this election. Perhaps it is a smart political strategy, but it leaves those of us dependent on the right to buy healthcare balancing blind on the edge of cliff.

Americans have learned that in order to survive in the Trump era, we must rip ourselves open, eviscerating our pride and revealing our secrets, telling these stories to beg for mercy. For women, that has meant unleashing memories of sexual assaults, retold to stone-faced audiences in public. For those of use with imperfect health, survival now seems to require throwing ourselves at the feet of elected officials, pleading to be treated with compassion.

In both cases, we have found very little benevolence from those in charge.

On Thursday, as the feeling returned to my hands and feet, Donald Trump posted this on Twitter: “All Republicans support people with pre-existing conditions, and if they don’t, they will after I speak to them. I am in total support.”

It is a provable lie. But here we are. This is the party’s new mantra.

Since the Affordable Care Act was signed into law eight years ago, the Republican party has worked overtime to sabotage, undermine, repeal and destroy it, the landmark law that by all objective measures took America a step closer to making healthcare a right rather than a privilege.

Until this year, Republicans were open about their plans. Their tactics have changed as more Americans have come to appreciate having healthcare and not going broke for it. Today about 50% of Americans support the law, while 40% oppose it.

That doesn’t mean the sabotage has slowed, let alone stopped, but in the midst of this crucial election. Republican candidates have simply begun lying about past votes and current plans.

From Texas senator Ted Cruz, a longtime ringleader of anti-ACA legislation, to a litany of House members who have voted to repeal the act, lawmakers seem to finally recognize that Americans want a guarantee of coverage. The trouble is, they don’t seem to be listening. They know the guarantee for sick people to be able to get insurance is the one part of the law everyone seems to like.

Thursday evening, my head pounding but legs working again, I went for a hike, the first time I’d been able to take on strenuous exercise in a week. On the way up the mountain, I looked across the valley to a where a giant, white painted L on one hill had been extended into a red, white and blue “LIAR”. Trump was coming to town that evening.

A week after waking up with numb hands and feet, I awoke to news that the Trump administration had rewritten rules on the healthcare law. The new changes, experts say, undermine the act by allowing states to offer health-insurance plans that don’t cover existing illnesses.

Nearly a decade into the fight over the right to healthcare, the president is dismantling the law on his own, even as he promises to protect those of us who rely on it.