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Chronic illness is often used as such a “catch all” phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then, couldn’t all of those words be used in the same vein? Don’t all chronic illnesses “disable” us in one way or another? Make us feel “diseased?”

Chronic, as it relates to illness, is defined as “persisting for a long time or constantly recurring.” Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite.

Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last for what can seem like the longest time and you struggle to see an end to them. This can be hard enough to deal with on your own, but factor in having to communicate your health issues to the outside world and you’re faced with a whole new set of complications to deal with.

 

Explaining the intricacies of a condition to an outsider can often be intimidating and challenging to say the least; particularly if you are new to it yourself and still learning. When we do discuss our condition with others and don’t get the response or reaction we perhaps expect, it can be quite the setback. Often, living with a chronic illness can feel humiliating. It can be embarrassing, distressing and complex. We may not want to talk about our condition, which is wholly our right, of course, yet sometimes our symptoms make that privilege all but impossible. If it is a visible condition it allows for comment, and that’s something we sadly can’t control.

So, pulling on at that thread of uninvited comment, a certain infuriating phrase that sticks in my head, and has been said to me upwards of 168798782784240 times (at last count anyway), is:

“There always seems to be something wrong with you…”

This is generally said off the cuff (and perhaps a feeble attempt at humor?) with a snide undertone. It’s often spoken with a question mark at the end of it; as though we are somehow expected to answer to it. It’s not really deserving of a question mark in my humble opinion, as it’s more of a statement of fact. I’m not sure what the relevance of such a question is either, other than to remind us that we are ill, all the time. Sadly, something we are all too aware of already.

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The only answer that could be given to such a bizarre poser (and I find it most effective bellowed through a megaphone) is “Yes, there is always something wrong with me. It’s incurable!” But that response only served to get me thrown out of the library and banned from the local church the last five times I used it.

It is phrases such as these that are upsetting to someone with a disability and/or illness for many, many reasons. Let me count the ways… (Seven. There are seven ways.)

1. It implies we are being untruthful about our health problems. If you have to query in a suspicious tone that expects us to answer for an incurable condition, then you nail your “I don’t believe you” colors firmly to the mast. This, funnily enough, doesn’t make for a comfortable conversation to follow.

2. It can make us feel like a nuisance. No person who even remotely cares for another person should make them feel this way. Implying we are using our condition for attention or exploiting it for our own gain is just mean at the root of it.

3. It singles us out. We don’t want to be sick, and we certainly don’t want to be treated any differently than a “normal” person. Suggesting we are seeking some end goal other than the best possible health makes us retreat into our shells, and that can be increasingly risky for those of us with already wavering mental health.

4. It makes us feel we are appearing like a hypochondriac. Anyone with a chronic illness dislikes hypochondriacs intensely. We have to eat, sleep and think about illness every day; we don’t need to hear you give us chapter and verse on that one time in 1983 when you had the measles. Just because you perhaps aren’t used to hearing people talk honestly about an incurable condition doesn’t make it any less true when we do.

5. It silences us from talking about our illness. This is not good. We need to talk about our conditions because it allows us to educate, share, unload and learn. The more we remain silent on what we are experiencing, the more withdrawn we become and the more ashamed we feel.

6. It makes us feel embarrassed and ashamed. As above: not good. Something we should never allow ourselves to feel. Chronic conditions can get such bad press; we need to be at the forefront of changing that, not being beaten down by uninformed opinions.

7. It reminds us there is always something wrong with us. Yes, we know.

On the flip side of this ghastly and mildly insensitive coin, however, when met with thoughtlessness of this degree, I often try to mentally counter these statements with any positives I can find in them. Easier said than done, but if you take a mental (and maybe physical) step back and look hard enough, you are bound to find something. Let’s throw the negativity over the balcony, crushing it painfully below, causing irrevocable damage and try that now.

1. Yes, there is always something wrong with me, yet I’m still here, being alive alongside you.

2. No, nope, sorry, I think that’s all I can come up with. Maybe I’m just not a very forgiving person.

The issue with phrases like the aforementioned “There always seems to be something wrong with you…” is that, whether intended that way or not, they are simply unkind and just so unnecessary. As I’m not (at time of writing) practiced in mind control, I can’t stop people thinking things like that of course, but I can certainly voice my discomfort when they allow the words to leave their lips. Meaning, if you’re going to openly say something along those lines to someone with a chronic illness, then you should really be prepared for the potentially messy fallout. What may seem an entirely innocent comment on our condition to you may come across as a not-so-subtle jibe directed at us for reasons we’ll have to retreat into paranoia to discover.

You see, it’s not “just a joke” when you make another human being feel essentially lesser. Kindness is so easy. It’s often found simply in inaction. It’s effortless! You can be kind by just not saying that thing you know would be taken badly should the person it’s aimed at hear you. Just don’t say it! It’s that simple! You can be kind by taking a moment, just one precious moment, to consider the outcome of your words. If you have an inkling that what you are about to say to another human being may be mean or insulting, then just don’t say it. No, you won’t receive an award for it, but you also won’t receive a black eye, some swings and roundabouts.

Think bad thoughts, by all means, we all do that. It’s one of the silent joys in life. You can think we are lazy (for example), without actually accusing us of being so.

Maybe just consider this: Are you the type of person who deliberately sets out to upset and offend another human being whose only crime is not acting or looking the way you want or expect them to? If you answered yes to that, then I hope you find what’s missing in your life someday.

(See how easy it is to be kind?)

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Thinkstock photo via Anna1000Arts.

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To whom it may concern,

We all know that invisible illnesses and diseases and disorders often get discredited by society as not being real and are stigmatized. We all have to fight for our voices and truths to be heard. We all have to advocate for ourselves and others who experience the same illness or disease or disorders as us.

I often wonder if I am alone in my newest experience or if others go through this as well.

 

Am I the only one who has a friend or family member who constantly and insistently proclaims that my various health issues are not that bad, that their friend or family member has it way worse than I do, simply because it is their friend or family member? However, this individual neither hears you out nor asks you about your experience, and solely sticks to their claim, that their friend or family member obviously experiences this condition worse than you do. But they really do not know and/or it may seem like they don’t care to know.

I do realize there are others out there who have it worse than me, just as there are others who have it better than me.

However, just because others vocalize, share their struggles verbally, openly share and/or show their struggling more frequently than I do, doesn’t automatically mean I don’t struggle. Just because I have become an expert at hiding my pain and daily struggle with my condition(s) doesn’t mean I do not have them. Just because I don’t constantly and loudly vocalize my complaints doesn’t mean I don’t have that condition. I have learned ways to deal and cope with this condition so I may pass as “normal,” “healthy” and “functioning.”

Likewise, just because my health issues may be worse than others doesn’t invalidate them and their health issue. It doesn’t suddenly mean they don’t struggle. It doesn’t mean that, because they can hide their illness better than I can, they are barely ill at all. It doesn’t mean that just because they are strong and can presumably handle it well, they don’t have this condition. Just because others don’t vocalize their struggles on a constant and regular basis doesn’t automatically mean they have a “mild case” of the said condition.

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I know the old adage of “the squeaky wheel gets the grease,” but not all silent wheels operate at 100 percent of their ability.

Please do not invalidate my thoughts, feelings, opinions, knowledge, experiences, suggestions, illnesses, disorders and diseases just because you know someone who has the same condition(s) as I do. Just because they are your friend or family member doesn’t automatically mean they struggle worse than I do, and it certainly doesn’t mean I don’t have it. Please stop downplaying my condition. Please stop belittling and dismissing me. Please stop cutting me off when I try to explain my truth and have my voice heard, just to tell me I do not and cannot possibly know how bad it can be… I know, I live with it, I experience it, on a daily basis.

How can you possibly know, if you never hear me out or never ask me? If whenever I try to share this with you, you stop me mid-sentence, just to tell me once more that your friend or family member has it so much worse than I do? Please just hear me out for once, at the very least. Please truly listen to me, my feelings and experiences.

Do you know what you are quietly communicating to me? Do you know the messages you are conveying to me? Especially when I try to tell you about my experiences and feelings and you cut me off and shut me down by dismissing me entirely.

You are telling me you do not believe me. You are telling me you do not respect me. You are telling me I do not know what I am talking about. You are telling me my thoughts and feelings do not matter, especially to you. You are essentially telling me I do not matter, at least not to you. That hurts, a lot!

If I am trying to share how I feel and what I am going through with you, it means I value your opinion, and our relationship is important to me.

However, if you keep treating me this way, you may end up no longer being someone who I trust or respect. I may not want to talk to you or be around you, because your lack of support and acknowledgement hurts me too much. I have enough to deal and cope with. I don’t need the added negativity to my already bleak situation due to my condition(s).

If you never listen to me or my story, then how can you honestly say your family member or friend has it so much worse than I do? Because you have no idea what I go through, what I experience or how I feel.

I am truly sorry your friend or family member has this too. I feel for them. I can relate to them, to their experiences, their pain, their feelings, their frustrations, to everything they are going through.

I understand what they are going through because I have been there or I
am currently experiencing it too.

It’s nice to know someone else understands what it’s like living with this condition. It is even nicer to know we aren’t alone and we aren’t the only one going through this.

The reason I am trying to share my truth about this condition with you is so you may understand, and so you may pass it on to your friend or family member, so they know there is another person who understands and can possibly be a source of comfort, support and a resource for more knowledge.

If you do believe us, please do not treat us as though we are complete invalids who cannot do anything. We have our good days, although they can be far and few between.

Please do not invalidate me. Just because you have accepted my chronic condition and understand there are limitations does not mean I can’t do anything at all. I still have my good days where I am able to do housework, work or even hard labor.

Do you find that this individual forgets details you tell them about your condition such as: the fact you were diagnosed, what medications you take (which is important because if something were to happen to you, an EMT or doctor or nurse needs to know your medical history, which includes the medications you take and what conditions you have), and what you can or cannot do? Do you find that they do not believe you about your diagnosis or medication until you show them your prescription(s) and/or other documents? You shouldn’t have to prove your condition exists to this individual. You shouldn’t have your condition downplayed, belittled or dismissed.

We shouldn’t have to continuously fight to have them hear us out.

We have enough to deal with just from the condition alone, plus having to prove ourselves to doctors, insurance companies, disability services and complete strangers. We should at least have enough respect and/or consideration from family and friends to not be treated with so little disregard as if we were children who don’t know anything. We are grown adults who deserve some respect. So please do us these two favors: please hear us out and please do not invalidate us.

Sincerely,

An invisible illness warrior

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Thinkstock photo via milanvirijevic.


I used to squirm when people would tell me I’m so strong. When they would go on and on about how they don’t know how I do it. How I live with so much pain and illness. How I remain positive and full of love.

I used to squirm because I felt like answering, “I have no other choice.”

But, that’s not true. They’re right. I have numerous choices. Choices about how I deal with chronic pain and chronic illness. Choices about whether I will dwell on the negative or the positive. Choices about whether I will be bitter, resentful and jealous, or decide to embrace joy, love and empathy.

 

Among those choices are a million tiny variations in between.

I’m never 100 percent positive, negative, happy, supportive, empathetic, bitter, jealous or loving. I’m a flawed, unique person, just like any other. I feel all things. But, I made a choice, when I was 23, that I would live my life with love. Joy. Friendship. Appreciation. Support.

I would live a passionate life. A happy life. Illness would not take that away from me. Pain would not hold me hostage. I would no longer allow myself to keep falling deeper and deeper into the abyss of “why me?”

Why not me? I’m not special or immune. If someone doesn’t have physical challenges, you can bet they have emotional challenges, or financial challenges, addiction challenges or any other kind of challenge. Life is never easy, but we can choose to make it mean something. We can choose to embrace the time we have here. We can choose to see the good amongst the bad.

I choose to focus on the great, the beautiful, the amazing. I allow myself to feel the more negative emotions, but I refuse to dwell there for very long.

My life is worth more than that. My life deserves joy and love.

So, maybe I am strong. I could have stopped truly living when my body made it physically torturous to move, but I chose to fully live. To feel all things and to embrace whatever comes my way.

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There is strength in being able to see the beauty amidst the pain.

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Thinkstock photo via Maltiase.


Since January, I have been struggling with chronic, around-the-clock nausea. The kind of stomach sickness that chooses to either creep up on you in the middle of the bread aisle or hits you like a falling burgundy brick as you buckle up your seatbelt. At times, the nausea has come at me with little to no warning, not even a “hello, how are you?” – how rude! And at other times, it lingered and spun its web into every nook and cranny of my day. The unpredictability of each episode made it impossible to be a reliable member of society since I would feel fine one moment and obliterated the next. To say this symptom bothered me more than my daily migraine or recent battle with nerve pain should tell you something. Body, I almost broke up with you!

 

When the problem initially started, I wasn’t too concerned as I have endured similar battles of queasiness. The last bout I remember being as bad as this one was during my senior year of college, where I walked around the streets of New York City clutching the germ-ridden rims of trash cans with no tequila shots in sight.

But as the months have muddied by with zero relief (aside from the four to six hours of bliss I receive from my anti-nausea medication, which I can only take sparingly throughout the week), I started seeing my medical team more often out of sheer desperation. I longed for a sense of control. There were lots of “what if’s?” that never came to fruition, and several puzzled faces from my surgeon who said to me on many an occasion, “I wish I knew, Kat.” The conclusion that each specialist came to was this: I just have so many ailments in a certain part of my body (thanks brain/middle ear/facial nerve), that the signals were colliding. Simply put, I was a circuit board on overdrive; a jean pocket fraying at the seams.

Eventually, I gave up my search of answers and wanted to start working on acceptance. Acceptance of this new trial, acceptance of my new-new-new normal, acceptance of this season in my life where I have almost no control over what and how my body responds to simply being awake.

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But then, on one last whim with my neurologist, he recommended me to a GI clinic where I went through an upper endoscopy procedure just to see. Highlights from that day include: when I woke up from anesthesia and squeezed my mom’s hand and said, “You’re still here!” as well as the giant stack of blueberry pancakes I don’t really remembering eating post-test.

And here’s the kicker, everyone. They found something! I have an esophageal ulcer! Yes, you read that punctuation correctly. I ended the announcement of my ulcer with an exclamation mark because this feels life-changing. I have always been the type of patient who has defied the odds of medicine and ended up with rare conditions and side effects. That’s me, the girl you read about in medical textbooks but never actually get to see a case like mine in person. But an ulcer? That’s normal people problems. And with a slight change in the foods I eat and a medicine that is currently coating my enthusiastic esophagus, I am slowly starting to feel better. I have gone from vomiting 10-12 times/week to one to two times. Sorry for the TMI, but this is substantial progress.

I tell you this story because there is a vital lesson of persistence in my almost-defeat. I almost rang the bell. I almost sealed the envelope on my own fate. But thanks to someone believing in my journey more than I believed in it myself, I am seeing the other side of what my body is capable of…healing. And that in itself was worth the hefty co-pay, don’t you think?

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Thinkstock photo via MistakeAnn.


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.

I’ve been in a brain freeze for the past few days. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons. When I expressed concerns, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) as my insurance. It made me realize that people have no idea what insurance is and how it works. We all think we know how it works, but honestly, the hows and whys are never really looked at in depth unless you need it.

I unfortunately need to use my insurance a lot. I will be one of the people placed into the high-risk pools according to the AHCA. The BCRA (in the version released on June 22, 2017) amended this by stating that states cannot pass laws allowing health insurance companies to deny coverage to applicants, including those with preexisting health issues; however, it allows states to offer scaled down insurance plans. This means that insurers are not required to offer “essential health benefits” (EHB) which were put in place by ACA.  There are 10 EHBs:

1. Ambulatory patient services (outpatient care you get without being admitted to a hospital)

2. Emergency services

3. Hospitalization (like surgery and overnight stays)

4. Pregnancy, maternity and newborn care (both before and after birth)

5. Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)

6. Prescription drugs

7. Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)

8. Laboratory services

9. Preventive and wellness services, including counseling, screenings and vaccines to keep you healthy, and chronic disease management

10. Pediatric services, including oral and vision care (but adult dental and vision coverage aren’t essential health benefits)

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With these benefits eliminated, an insurance company could impose annual caps or a lifetime coverage cap for people who need or want those benefits. Again, I do not currently use the ACA, but the ACA did impact my personal insurance by not allowing a cap on coverage. The AHCA and BCRA allow insurance companies (and yes, that means private insurance, too!) to cap people’s insurance.

What does capping insurance mean? Well, say I have a $1,000,000 coverage limit for my lifetime (there could also be yearly caps). Once I meet that limit, I would lose my insurance and have to pay out-of-pocket for everything from that point on. Now, some people wouldn’t worry about reaching that limit, but my current drug is $18,000 per month (in addition to all of my other medication). That drug alone costs my insurance $216,000 a year. I will surpass that million-dollar coverage limit in less than five years with a lifetime cap. I firmly believe this drug is the only reason I am still able to walk and use my hands functionally. I need it to live. I need it to work.

As for high-risk pools, it seems the BCRA will not include those, but they will allow states to offer these pared down insurance plans that do not cover essential health benefits. What does that mean? Well, it means that people who want or need to have those EHBs in their insurance will have to pay more for more coverage. Essentially, people with pre-existing conditions will have out-of-pocket costs rise significantly. How much? No one knows exactly.

I live with and manage thyroid disease, DSAP (skin disease), fibromyalgia, spondyloarthropathy and high blood pressure. I am not being a drama queen when I say I am petrified. The amount of coverage I require just to function may be more than I can actually afford. Let’s also not forget that no one can predict that they will remain healthy or free from accident/injury throughout their lifetime. Someone may opt for an insurance plan without EHBs and then years later require rehabilitative medicine following a car accident or stroke. How will they afford for expensive therapies if their insurance doesn’t cover it?

I also think about how many people across this country have preexisting conditions. The threat of higher deductibles and higher prices for coverage causes me to have higher anxiety all the way around. The scariest thing for me is not just the ramifications of this bill passing through the Senate, but that people in my government and country feel it is OK to cause millions of Americans to lose affordable insurance. To classify those with preexisting conditions as if we are simply drains on the healthcare system instead of equals to other tax-paying citizens.

I know I am lucky to have insurance. I know my costs are higher than many others in my insurance pool. Should I feel guilty? Should I be grateful and never complain? I know many of my fellow Americans don’t want to pay taxes for insurance that includes someone like me. I have no issue with doing so. I’m happy to pay extra money so my fellow citizens have the medical care they need when they need it. That is what insurance is after all. You pay for coverage you may never use, but when you get sick, it’s there.

People don’t seem to understand how important it is to have insurance coverage. Some politicians have made outlandish statements that indicate to me they have no idea what it is like to live with chronic or acute illness. For example: Rep. Raul Labrador (R-Idaho) stated in a town hall, “Nobody dies because they don’t have access to health care.” Um, what? Go ahead and re-read that sentence again. I don’t have statistics on it, but I’m willing to bet that many people in the U.S. die each year because they don’t have health care.

In addition to penalizing sick people, there will also be an age tax. It could raise the premiums for older adults to be five times what younger adults are charged. This is all related to insurers being able to charge you more and exclude coverage for preexisting conditions (for up to 18 months) if you have a lapse in health care coverage for more than 63 days. So imagine, you lose your job to layoffs or downsizing and can’t afford to keep up insurance while you job search. You get it back once you get a new job that may or may not pay you less than what you made before, but now you might have to pay more for health insurance? I guess being unlucky is also a preexisting condition.

Now in saying all of this, I will admit, the ACA (Obamacare) needed a lot of work, but I think it was the first move in the right direction. I feel like politicians are so polarized by their party that they refuse to work together…and Americans are paying the price, especially those with preexisting conditions.

Just this week, it was announced that plans to vote on the BCRA will be procedural only. Republicans do not have enough votes to push the bill through and Democrats and some of the GOP are not on board. The President tweeted, “Republicans should just REPEAL failing ObamaCare now & work on a new Healthcare Plan that will start from a clean slate. Dems will join in!”  

Wow. The leader of our country wants the current law repealed so we can have a “clean slate.” How convenient! If only patients could get a clean slate. Make our diseases go away until we are ready to finally handle it! What a fabulous idea! I can see it now: cancer patients, autoimmune patients and differently abled patients all putting their treatments on hold until Washington D.C. politicians can figure stuff out. That sounds logical! I propose this instead: Patients under ObamaCare go about getting their treatments and not pay anything until our political leaders figure things out! How is that for a clean slate?

Whatever side of the aisle you land on, it’s time to take a stand. It’s time to make the healthcare industry and Washington D.C. catch up to the needs of Americans with and without preexisting conditions. It’s time that patients across the country let their voices be heard.  

Call, text, write, email and visit with your elected officials. Resistbot is one way to turn your texts into faxes that reach officials. Common Cause helps you figure out who your elected officials are. It will take only a few minutes a day to let your voice be heard. If you want affordable healthcare, it’s time to speak up! When President Trump said, “Nobody knew that healthcare could be so complicated,” I responded, “I did!”

Being silent is no longer an option. I preexist; therefore, I am ready to fight for affordable healthcare!

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Thinkstock photo via flySnow.


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

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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.

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Thinkstock photo by Hakan Corbaci

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