This Is What Can Happen When You Can't Afford Decent Healthcare


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.

There’s an old saying: a picture is worth a thousand words. I’m going to share one of mine. This is what happens when you cannot afford decent healthcare. Not hypothetically. Really. No, it’s not a pleasant photo. That’s the reality of it, though, and the frightening thing is that it’s a very minor example of the consequences of being uninsured, underinsured or unable to afford care.

This photo isn’t just about physical pain. It represents time lost from work. Less ability to perform tasks that one might need for employment (not being able to stand or go up stairs knocks out a lot of potential jobs). Less quality of life.

Warning: The photos below are graphic.

 

knee with bruise

knee with dent in it

What’s that, you said? Oh, that’s my knee. You’re right, a knee isn’t supposed to have dents like that.

I injured this knee several years ago, before the Affordable Care Act (ACA) was in effect. At the time I’d already been diagnosed with asthma and polycystic ovary syndrome; I hadn’t yet obtained names for all of my congenital and genetic issues, but they were causing massive problems.

I was still well enough to work, though, and was in a professional position where I made use of my four-year university degree. It was the best job I could find at the time, even though I did actively look for something better. My bosses had a nasty habit of scheduling my colleagues and me just under full time — literally, 0.5 hours off — so they didn’t have to provide benefits. Most of us made up the difference with second jobs. I spent about three hours a day commuting; the trip took three buses in each direction. It wouldn’t have mattered if we were full-time anyway; the premiums on the company’s group health insurance were so prohibitive that almost nobody could take advantage of it. My state had a high-risk pool, but the cost of that was, again, completely unaffordable. I had a bare-bones plan that covered emergency and in-patient hospital — which still put me in a better place than many other people.

I hurt my knee while racewalking — I didn’t turn it or fall; it just randomly failed on me. I exercised every day, and walked miles every week, so it was a surprise. The joint swelled to a frightening size and became so unstable that it buckled at random.

I didn’t have coverage for private doctors’ visits or imaging studies, and the cost of seeing an orthopedist in my city would have been between $400 and $700 just for the consultation. I called around to the various community clinics in my area. I was put on hold for considerable periods of time, only to learn that they weren’t accepting new patients. I limped around with the knee for half a year before I finally was able to make an appointment at one of the clinics.

At the first appointment, the attending physician did some physical tests and confirmed that my knee was exhibiting several specific signs of injury, but declined to send me for an MRI. Instead, I was referred to their physical therapist. The PT worked out of a regular exam room, did not have any equipment, and gave me one exercise that had nothing to do with my knee. When I mentioned that I was concerned about the joint’s instability, he shrugged.

”Well, you could wear a sleeve.”

”What kind of ‘sleeve?’ Do you mean a brace? Do you have a brand you recommend?”

”I don’t believe in braces,” he told me.

The clinic staff shrugged when I asked them for a brace recommendation, too. I finally went on Amazon and chose one on my own. To this day I have no idea if it was the correct thing to do for my injury, but it kept the knee from buckling at random quite as much.

At the second clinic appointment, I finally pressed my case enough to be sent for X-rays. However, I was refused an MRI, despite the positive tests that had been conducted at my first visit and the fact that the knee was still buckling, unstable and swollen, with a visible dent in one side. When I argued it out, I was denied again.

 

The only thing that was offered to me was a “treatment” that involved digging needles into many points around my knee and injecting what I later found out was… sugar water. I’m sure there are those who will loudly proclaim that I made a choice to have that treatment. True, but desperation is a powerful motivator. My other alternative was to do nothing, because there was no way I could afford any other care. A 0.005 percent chance that the quackery was real was better than a 100 percent chance of nothing. I was also hoping that if I cooperated, they’d eventually see that it wasn’t working and send me for proper treatment. They didn’t. When that became apparent, I stopped attending the clinic.

I switched to another clinic, where I spent close to four hours waiting at every appointment. There was no way to reconcile the long waits with work, so I ended up taking unpaid days off whenever I needed to see the doctor. They sent me for more X-rays, but the trail once again ended there. The waiting list for their orthopedist was months long. When I finally saw him, he laughed, told me I didn’t need physical therapy, and offered to shoot up my knee with cortisone.

I gave up. I was getting sicker as time went on, because I had not yet been diagnosed, much less treated for, my genetic illness — primary immune deficiency — or my other major issues. They were wearing me down. My knee never healed. When I finally received decent insurance through the ACA, and did get an MRI with contrast, it showed, among other things, damage to the femur at the knee joint.

As a result of the lack of appropriate treatment, my knee was permanently damaged and misshapen. Today, it doesn’t resemble a joint. It still buckles, randomly hyper-extends, and sometimes locks in place when it’s in the same position for a while. The joint makes snapping sounds when it moves. It is one of several reasons I can’t do stairs or stand for long periods of time. The only reason I don’t have a limp is because I’ve been able to modify my gait to mask the fact that the knee doesn’t really bend when I walk anymore.

That’s what happens when people can’t afford decent medical care. If I’d had comprehensive, affordable coverage, I could have perhaps gone to an orthopedist who would have done imaging studies, sent me for real physical or occupational therapy, and treated my injury. Even if my knee might not have been as good as new afterward, more function might have been preserved than what I have now.

We can yell about the ACA until dawn. Let’s be real: there are issues that have not been fully addressed by the ACA, such as the facts that premiums, co-pays, the cost of care, co-insurance and prescription drug costs continue to be excessive for many. You might pay for insurance but be unable to use it because you have to meet a $3,000 deductible first. You might have 80/20 insurance, and 20 percent of a $10,000 or $500,000 bill is still scary and unaffordable. Large co-pays for doctors’ visits and prescriptions can add up quickly. Even people with Medicare and Tricare might struggle with healthcare costs.

However, the National Disability Navigator Resource Collaborative points out eight key protections offered by the ACA which help patients, such as a prohibition on lifetime spending caps, guaranteed renewal of coverage, essential benefits, and no exclusions on people with pre-existing conditions.

The ACA’s Medicaid expansion has also helped non-elderly individuals with disabilities – both those who work and those who are too sick to work — who, according to the Henry J. Kaiser Foundation, comprise 15 percent of enrollment. Among other things, Medicaid covers nursing and home health care services that are vital for independence but would be too costly for disabled patients to afford otherwise, even with private insurance. In my opinion, we should build on those protections, not sweep them away.

When I start hearing about bills that drastically break down many of those protections, it scares me. I fear that it will result in more untreated injuries and illnesses. More misery. More people who have to choose between losing their house to medical expenses or losing their lives. More working people with disabilities being institutionalized and losing their jobs, since they can no longer receive the home health assistance provided by Medicaid that allowed them to remain independent and employed.

Health, life and death should not be political issues. The question of whether your injury or condition has been treated, managed or rehabilitated to the best degree possible — or left to fester without care — shouldn’t hinge on political ideology or greed.

So I hope you will remember this photo the next time you hear a politician who seems indifferent about the harm that healthcare cuts could cause. There are concrete, real repercussions when people don’t have affordable, accessible, competent care. Here’s one of them.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Hakan Corbaci


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

woman drinking water and sitting in front of a fan

10 Ways to Beat the Heat When Chronically Ill

Summer is here, and it’s hot! I mean really hot! Many of us with chronic illnesses have a sensitivity to heat. I’ve never particularly liked hot weather, and I can’t believe there are people who do; but, since I became chronically ill, I really cannot tolerate extreme heat. I feel weak, dizzy and faint. Although [...]

5 Things to Know If You're Chronically Ill and Traveling Abroad

Travel and chronic illness don’t exactly mix. It’s bad enough facing chronic illness when you’re home and have the support of friends, family and a medical system you know. When you’re abroad, it’s a whole other level. There are no safety nets. You have to learn quickly how to navigate new medical systems in foreign countries. I’m [...]

Trying to Keep Up With My Historic Home Restoration While Chronically Ill

Turning the 125-year-old door knob with no lock as a determent, I walked with trepidation into the giant space with unexplained sounds, an abundance of dust, rodents, spiders and unending stairs. That night, almost as a dare, I attempted to stay overnight in this house of horrors and centuries of possible ghosts, while a tremendous [...]
Woman Rappelling on Cliff

Is a Day of Fun Worth a Few Days of Pain?

Yesterday my brother took me on an adventure! I woke up in one of those moods where I just had this need deep inside of me to go out and do something. So he and a friend took me rappelling for the first time. I was a little nervous about going as I had never [...]