Healthcare in the Self-Proclaimed Greatest Country in the World

It’s no secret by now that my regular readers know I have chronic illness. I may not have identified each one I have by name, but regardless it has been made clear that my daily life is sometimes greatly negatively impacted by multiple physical issues. Yet, as I seek help from one of the greatest healthcare systems in the world - I get left with little more than admonishment. This has become the new American gold standard in treatment - and it’s appalling.

After penning my last article about how I’ll never be able to work in the United States again in this current culture due to my disabilities, I decided to consult my doctor for options on what to do next. Because my several chronic conditions aren’t visibly disabling and downright obvious, it’s difficult to traverse the road of accommodations.

Most people say, “Well why don’t you do this *insert oversimplified cure*? Or take this medication? Or talk to HR? Or -” and the list goes on, like this should be as simple as ordering a drive-thru meal. The short answer is that it’s just much more complicated than one would believe.

As a disabilities advocate, I understand the nuances that are assigned to the notion of disability. The barriers; the stigmas. Due to inherent ableism bias, almost no one in this country is treated equitably when it comes to disability. Regardless of if your disability clearly negatively impacts you, society will always attempt to deny your experience.

The morning of my doctor’s appointment had arrived. I requested a virtual appointment, because driving six towns over, along the span of forty minutes was just a little too much that week, especially since I was already anticipating an uncomfortable and shame provoking conversation. The funny thing is that my current doctor has treated me for 3.5 years and is all in all, a decent doctor; but that doesn’t make her or any other provider immune to bias.

“Good morning” she started. “So what’s going on?”

I begin to explain my troubles with working - that not just one of my conditions is making me unable to consistently perform, but rather a combination of multiple conditions that limits my abilities from week to week. She frowned.

“Well, what are you saying?” she asked suspiciously.

Frustration began to build in my chest, muscles tightening. No, I’m not looking for disability I thought. Of course their minds go directly to that - wondering if somehow their patients are trying to scam the system.

“I am saying that I have these issues which hinder my ability to work full-time due to the fact that I cannot commit coming into an office daily due to the many medical issues I have. For example, some days I wake up and begin my day with almost passing out. Some days, it doesn’t get better. For two years I struggled with almost passing out multiple times per day. I cannot bend over or squat for any longer than 10 seconds, nor can I do it more than once. I cannot consistently lift anything for the same reason - my blood pressure drops and I almost pass out. Nor can I stand in one place for longer than 30 minutes without becoming nauseated and doing the same. On days that this is not the issue, I have a debilitating skin disease that when it flares makes it difficult to walk.” I started.

As I continued to list more and more symptoms and reasons why, she stopped me.

“Have you ever considered working part-time. It’s lucky you can rely on your husband’s income, so you don't really need to work.”

Immediately my face narrowed. I paused, feeling shame and anger. The point is not that I can live off of my husband, so I should feel grateful - she is missing the point entirely. Every person has a right to autonomy, the right to try to earn a living for themselves - and when they cannot, they should be able to live without fear of getting their basic needs met. This is why disability income exists. However, for people like me who sit in-between, who can do very limited types of work (such as write or some remote tasks), disability should not be the go-to. Nor, however, should people who crave independence and want the ability to contribute to our families financially be shoved aside and asked to ‘be grateful’ that we can effectively mooch off of our spouses. Suppose my husband gets injured and can no longer work? Suppose he dies, leaving me two young children to raise and provide for? What are the medical establishment’s answers then? Suck it up? Find a new man to gold-dig? To say I was left offended was an understatement. I went to the doctor for an exploration of options, not for a lecture in gratitude.

“All of the positions I have been considering are part-time. While my family can live somewhat comfortably, I have student debt I need to pay. My debt. I’d also like to be able to purchase a house in the next few years.” I say softly.

“Oh, I understand. Many of us have those student loans,” she said in response.

“Okay…” I begin, perplexed at her non-answer. “I guess what I am asking you is, since I am not pursuing disability because I do have a limited skillset, what are my options since I am not totally disabled but I am also not able-bodied either?”

She paused.

“Well, I suppose you need to try hard to find something,” she began. I cut her off, irritated.

“I’ve been applying to jobs for six months. I’ve had one interview. I had one offer, but it quickly becomes clear that after the additional expectations were revealed in the offer, it wasn’t going to work.”

“Why not keep writing?” she asked, annoyed at my honesty.

“I can’t find any writing jobs that I can support myself with, to be honest. The market is oversaturated with copywriters. In the last three years I’ve made less than $5,000.”

“What about remote work?” she pressed.

“I’ve applied to many remote positions. On average, they have thousands of applicants per position. Remote work is harder to get than writing jobs. Remote positions are highly sought after at the moment. It’s a new trend.”

“I didn’t know that,” she chuckled. “Huh.”

She types at her computer for a moment or two. Finally, she looks up again.

“Well, I would say that none of your conditions, though you do have many and they interfere with your life from time to time, qualify for disability.” she says.

“I am not looking for disability benefits,” I repeat.

“I suppose you can either choose to not work or get a part-time position and then speak to HR about getting all of your needed accommodations. I would be willing to write a note for those.” she replied.

This I did not know - and this is the type of information I was looking for, but also I found myself simultaneously irritated at her response - “choose to not work”. On days that I almost pass out and have to sit or lay on the ground, it doesn’t feel so much like a choice.

“I appreciate that information, as I did not know that,” I replied, flustered. “However, I tend to do contracted work because I prefer to deal with my physical issues at home.” Immediately, I knew I had said the wrong thing.

“I think that your primary problem, saying things like you prefer to work at home, is anxiety. You’re anxious in public and would prefer to be in a setting that is more comfortable to you. It’s not a bad thing, but it also is a choice that is driven by anxiety more than anything else.”

At this point, shame washed over me for a moment - maybe it all is in my head I think to myself, until a red hot rage erupted through the wall of shame I’ve endured from medical professionals for years:

NO! This is NOT anxiety, my intuition bellowed, leaving ringing in my ears.

Is anxiety equivalent to passing out and hitting your head, knocking you unconscious like your cardiologist urged you to watch for? Remember when she told you to lay down in the middle of the grocery store when you felt bad because most of her patients with your condition that die, die from head traumas caused when passing out? Is it that you’re anxious and seek comfort in your home? Or is it that the world has proven its deficit in supporting people with complex needs, and that you can keep yourself safer at home than in the world?

As my mind reeled, pissed off at the suggestion that in reality, all of my issues boil down to anxiety; I sat seething. Attempting to remain composed and address that comment, my words became jumbled, my thoughts incoherent.

“I…it’s not anxiety driven. I really do have these issues -” I began, but unable to finish before she cut me off.

“Oh, I know! It happens. But I think you can work. You can find a job that fits your needs and then if you need accommodations I can write those for you. I understand the need for your visit now. Is there anything else you wanted to discuss?” she asks.

All I can think in my mind is, no, you don’t know. You’ve just chosen to shut me out, to blame me for my need for aid. As soon as I mentioned preferring my home because that’s where I can best control the environment for my conditions to remain safe, you decided I was just anxious. Regardless of the fact that I have two public-facing volunteer positions which require me to interact with the public frequently. I shook my head no. It was crystal clear that this appointment was all for nothing, and any further questions would be weaponized against me, instead of for helping a relatively young woman navigate a very stressful, heartbreaking time in her life.

I logged off of the computer feeling defeated. As I talked to other people about the situation, the defeat just compounded. So many people have so much internalized ableism that they cannot see the forrest beyond the trees. Feeling demoralized and empty, I tried to forget the experience.

Alas, over the last few weeks I haven’t been able to forget it. I’ve been having new symptoms, flare ups of uncontrolled illness. Yet, I find myself feeling so discouraged by my interaction with healthcare providers throughout the years that I don’t even want to attempt to get treatment anymore. Accepting treatment many times also means accepting misdiagnosis, nasty comments, blame, and even outright abuse. Blame for my inherent ‘laziness’. Blame for my ‘hysteria and anxiety’. Blame for my fatness causing every other problem I’ve ever experienced. Blame for my just being a female patient.

This is only the tip of the horrendous iceberg. I am considered lucky in this case. I can at least somewhat afford the $30 copay every time I got to the doctor, plus the money for required testing. What do others do? Likely, they don’t see the doctor - furthering the severity of their illness, even shortening their lives.

I find myself exhausted, sitting at the precipice of this capitalist, for-profit nightmare masquerading as healthcare. I find myself overwhelmed with the ignorance and bias of everyone, especially that of the doctors. The ableism in everyday society is exhausting, unbearable to those with the most severe of disabilities. To me, the lack of caring or education centering around people with disabilities is unconscionable at best.

Years ago, before we emerged into the industrial age, for thousands of years humans utilized a bartering system. Or at the very least, it was easier to open a business and offer services and products because there was little competition in that particular little corner of the world. Finding work would not be so difficult in my particular situation. It would not be unfathomable that I could work for a newspaper, or better yet write documents for hire at a decent salary from home. The butcher and baker I would visit frequently for my food needs, and in turn later they would visit me for marketing services for their shops. Life then was simpler, less globalized. You shopped and utilized the services of your town. Everyone could make a living. Everyone could and did contribute in the ways in which they were skilled. Now, even though I am highly educated and highly skilled, I cannot find a job without extreme difficulty which fits my needs. It’s truly ridiculous how we’ve let society run away from us. How we have enabled corporations to take precedence over people.

Am I in despair about my situation? Not much anymore. However, I find the state of our world to be much more distressing. People are entitled to healthcare, to autonomy, to be able to contribute in the ways in which they are able. They are entitled to having their basic needs met and to not be in chronic pain. They deserve good healthcare and nutrition, a roof over their heads, and at least a basic education. As it is now, I can’t say we guarantee any of the aforementioned. The desire to live should not be so controversial, and yet here we stand at the crossroads.