Not Your Inspiration Porn

There’s this shroud of mystery, in regards to those who claim to be chronically ill – and because humans are involved, so is the very nature of speculation. It’s no big secret that mystery entices the imagination and attracts all kinds of attention: most of which, are ridiculous and borderline degrading. Some people are so rude at times, due in most part: to ignorance, that the spectrum is incredibly off-kilter. So, let me educate you, the curious and genuinely concerned….

What is chronic illness? 

The term “chronic illness” in itself, is a broad term for a myriad of diseases/conditions that causes its prey to endure periods of long term sickness. It’s a life sentence, where there are bouts of greatness and sagas of mind numbing crud. Sure, it sounds like I’m being melodramatic, but I promise you: no amount of exaggeration from the world’s greatest drama television can even come close to describing what an individual with a chronic illness, experiences on a day-to-day basis. Especially, if that person’s physician(s) have no clue as to what is wrecking havoc against the body… 

As an individual in this setting, I can only give you my perspective… 

Let me begin by emphasizing that living with an unrelenting, chronic illness, is by far: the most difficult thing I’ve had to do… and not knowing what is the culprit, is the rotted cherry on top. It’s absolutely horrifying. There is no cure, only treatment of symptoms. Physicians like to call this: “Treating the patient’s quality of life.” In other words, because we like to walk on eggshells in this society (rather than say what one means): doctors prescribe treatments to “help you cope.” Such treatment regiments are typically (but not limited to) medications to control pain, sleep aides, and anti-depressants. A typical day for someone like me, involves amassing large quantities of “suck it up, princess,” pep-talks, and quite a bit of stubbornness. Perseverance has nothing to do with it, as what I am describing, is fighting to live: it is pure survival.

Despite popular belief, I and others like me, must surmount daunting obstacles just to be able to endure what healthy/non-sicklies deem a typical day. No, I am not lazy, nor am I unmotivated… far from it: I have limited energy reserves. Therefore, I must be creative in how day-to-day activities are accomplished. I am exhausted all the time. Not a day passes that I don’t feel fatigued. No amount of rest quenches my fatigue: my energy reserves are tapped out. Getting out of bed is a huge chore, as it requires accessing an already dried up well of energy in hopes of gathering whatever amount of mental acuity is present. Anything that comes second nature to the healthy individual, wipes out the chronically ill patient. The saying, “Nothing comes free”, has a whole different connotation, here. Minute tasks are something I must prepare myself for.

Furthermore, the word, fatigue, is improperly used. Fatigue is not the act of being “very tired”. Oh no, it is much worse than that. I can handle being very tired, because a fifteen minute power nap, or a thirty minute break, resolves that problem. When your body is fatigued, no amount of sleep is going to help you, because honey, you are sick. All the cells in your body are gluttons, and you cannot keep up with demand: time to close up shop. 

Lack of energy, and general malaise aside: the worst part of living with a chronic illness is not the symptoms… it is the people part of it. What do I mean by that? 

Opinions: everyone has them, and when it comes to illness, they all suck the vast majority of the time. You have those who: 

Have this grandiose picture of a sick person embodying the angel of death: charging through the valleys of pestilence and blood infested waters on a fierce, pallor stead with red eyes, whose piercing cries fill the night air with promises of suffering… 

Sure, it sounds ridiculous, but I once had a cafeteria attendant tell me, while bringing in my lunch while I was in the hospital, that all her co-workers thought I was faking illness, because I didn’t look sick. Just because a patient takes advantage of her attending physician’s kindness in allowing her to wear normal clothes (and leave her room to roam the halls from time-to-time, as tolerated), doesn’t mean one isn’t severely ill. There are strip clubs if you want to see someone’s “goodies”. As for me, I prefer to keep my giblets tucked away.

Our culture has a skewed vision of what suffering looks like, and it is deplorable. As a whole, society believes that either the infirm miraculously recover, or, die. Those are the only two “acceptable” options, as it is unacceptable to consider that life would be cruel enough to sentence someone to a lifetime of illness. 

Allow stereotypes to cloud their better judgment. 

For example, an overweight/obese patient presents in the clinic with the chief (primary) complaints of shortness of breath and fatigue. The knee-jerk differential diagnoses fall into the realm of: diabetic related hypoglycemia (extremely low blood sugar), sleep apnea, insomnia, and the rationalization that extra pounds of fat equates to extra effort in breathing due to the body having to accommodate a larger than normal body mass. Therefore, weight loss equates a return to normalcy. After all, those who are overweight/obese automatically are diabetic, suffer from insomnia/sleep disorders, and have a harder time breathing…

That line of thinking, although warranted in most cases, is bullshit (and a medical/societal cop-out). Difficulty breathing/fatigue isn’t mutually exclusive to those who are an unhealthy weight. So, let’s take those tinged glasses off and problem-solve the CORRECT way: objectively. 

My personal favorite: the “Bless Your Heart” crew. 

This particular breed of people does more harm than good. Do not think for one minute, that I, and any other person who’s chronically ill, buy into that particular attempt at empathy. First of all, I’m southern born and bred: that line doesn’t fly and isn’t empathy. There are two connotations that “bless your heart” entails: 1) I am stupid; or, 2) people are to feel sorry for me. It’s the equivalent of saying, “You poor dear;” complete with a pat on the back with sad eyes.

Secondly, don’t you dare make me look like a martyr, fighting the “good fight” despite the futility. I most certainly am not a source of inspiration porn. There is nothing brave about survival: it is instinct. So, kindly take that “Miss America” quackery and shove it up your ass. Not to mention, I’d be super appreciative if I could observe you minding your own business as you walk away. Please, and thank you.

And let me tell you: the people part of it includes family and friends. Dear God, those closest to those whom are extensively ill, are the worst offenders – even if their intentions come from a good place. Now, before I delve any further into this: let me clarify that I love my family and friends whole-heartedly… I truly do, but there are several things those wishing to be in the inner circle, need to accomplish (remember: little energy reserves means drama/B.S. tolerance levels are depleted as well) before even approaching those with chronic illnesses: 

Calm the fuck down… 

Please, please, please, please take a deep breath, and exhale. Ever seen the posters around town/social media saying: “Keep calm, and carry on”? By all means, please use that saying as a daily devotional, and please be of sound mind in order to be around me. Dealing with an unknown illness, that is bit-by-bit, taking its toll, is stressful enough – not to mention, scary – so please (even if you don’t feel it/find it difficult to drum up the strength) put on a smile for me. Be strong for me, because little by little, I’m losing the ability to do the same, and need someone else to be my pillar of strength…. I can’t exude strength at all times: that’s not being honest/fair to myself, nor, is it fair to you.

Yes, I know: the quest to find the coveted diagnosis is super frustrating, because the pace is a bit dragging... and okay, I understand it is terrifying for you to watch your loved one go through this, because you have no control over it. But here’s the thing: no one, not even me, has control. So pretty please, with a cherry on top, keep in mind how it feels for the one living it. If there were any way to hasten the process (perhaps by choosing between doors numbered 1-3, and whatever I choose, is the diagnosis/cure and we all live happily ever after), then by all means, I’d jump on that particular band wagon in a heartbeat. 

For the fidgety/borderline support system: Stop force feeding me the line, “I am here for you”, because low and behold, you are not. 

As far as anyone knows, you’ve disappeared off of the face of the planet. And don’t you dare say that all I need to do is call: just don’t you dare dirty my floors with that particular level of meaningless, filth, because I will just as soon, spit in your face. Being “there for someone” is a two-way street. To those of you who fit into this category, and are chronic offenders, take note: it is not okay to dish that line and not keep your word.

It is vital to have a functional support system. How many times does one have to mention “I’m tired/lack energy”, before the archaic wheel complete with the near comatose guinea pig inside your mothball ridden mind, begins to spin – and you kick into gear? I mean, seriously: you cannot come in my house and kick my dog, and expect that I’m not going to kick your ass. You’ve got to be out of your mind, if you think I’m going to waste whatever fraction of energy is left that my gluttonous cells haven’t devoured, pining after you: because, my dear, that is a huge “fuck you”, complete with both middle fingers in your face. 

To clarify: 

If you are telling a friend, who has one or more chronic illness(es), that you are going to be present in their time of need, then actually mean it. It’s hard enough for those in my position to accept that they’re going to be nearly, if not 100%, reliable on others. Friends are a lifeline, and without them, the process of disease fighting/finding answers becomes very isolating: friends are a lifeline to what it was like to be “normal” and carefree: a reminder of one’s identity pre-health-suck. Do not make empty promises. 

MOVING ON… 

Stop giving advice on alternative therapies that are unproven – especially if that quack, Dr. Oz approves of it. 

Unless there is scientific evidence backing such claims: then as far as I am concerned, those therapies are voodoo. And while on the topic of voodoo: positive thinking only gets a person so far. So please, don’t feed me the line, “Darling, just keep thinking happy thoughts.” The last time I looked, thinking happy thoughts worked for flying, in the movie Peter Pan, not in the real world: as I am positive that I feel like shit most days and I am positive that I’ll still have a good day anyway, because I’m generally an optimistic person; and I am positive that I will stick my foot up the next person’s ass who says, “just heal yourself with positive thoughts”. Trust me: if thinking happy thoughts cured health-suck, I’d be Jesus… which I most certain am not…. 

DON’T YOU DARE accuse anyone with a chronic illness – especially to those who are in the process of searching for the specific diagnosis – as “faking it.” 

It’s enough to get it from complete strangers: but to get that line from family/close friends is just… how dare you. It’s enough to question one’s own sanity when test after test comes up inconclusive. However, when those you hold dearest to your heart and have the utmost respect for, begin to genuinely harass you out of either fear of the unknown/disbelief/wanting to deny the gravity/reality of the situation at hand (especially when they have seen with their own eyes, that there is definitely something sinister going on) life becomes very bleak. To live with that day-in and day-out, only to get a respite during sleep: that’s bullshit. Just how dare you put anyone through that? Just because it’s not obvious, doesn’t mean there isn’t something wrong. 

How should you approach chronic illness? 

With grace and humility: yes, you read correctly. Life, unlike how we’d like to believe, cannot be controlled. There are so many variables, that all one can do, is enjoy the ride and make the best out of whatever obstacle is thrown in the way. 

So, with all this said: what truly is inspirational? 

Coming from a place of love; a support system whose function serves as a reminder of one’s shared humanity; friends and family who rather than tread on egg-shells, embrace the unknown… loved ones who, while mindful of one’s health situation, doesn’t define the one who is sick by his/her illness. A healthcare team that actively keeps in check the knee-jerk line of thinking, especially when circumstances are unclear: Physicians who are comfortable saying “I don’t know” and treat patients with chronic illnesses as people, and not as a lump of symptoms/basket case to turf to psych.

If You Don’t Understand My Silence, Then How Will You Understand My Words?

Illness isn’t just the physical manifestation of disease and its internal processes, it is also the expression of silence. Words are limited, in fact: inept, at describing precisely what it feels to experience the bondage of failing health. There aren’t enough adjectives in any language, past and present, to permit a shared communion between the individual who lives that life and their loved ones. The best one can do, is be empathetic - which while perhaps sobering for those looking to comfort the infirm, succeeds to only to isolate them.

Yeah, I know, not what you thought empathy accomplishes - and rather depressing. Now, I’m not saying to refrain from being empathetic toward circumstances you’ve never experienced. Empathy is a powerful tool: it enables one to take a step back and ask the question, “How would I feel, if I were in this person’s shoes?”… internal questions such as this, allow individuals an outlet of cause/effect influenced decision making - it is being acutely aware that one’s actions/reactions affect the world around them: a critical, yet invaluable, practice when in unfamiliar situations.

I know I’ve said it countless of times, but it is vital for loved ones to be aware of how even the most harmless of intentions, no matter if they come from a good place, has the ability to cause harm/offense. The expression of concern, for example, is very much appreciated in the realm of illness. However, if the way you express concern is by micro-managing every possible activity; or, by being over attentive: then, you are creating a highly volatile atmosphere.

Depending on the severity of illness, the recipient of your concern is already battling a hostile environment caused by disease. In fact, that person has already sacrificed so much: time, income, autonomy, etc. It is a daily reminder of what one has had to compromise, in order to survive, observing their loved ones take for granted what they now lack. And sure, that sounds whiny, but let me tell you: it sucks to watch friends and family graduate on time and establish their career/families, and know that all your plans are on hold for God knows how long - if one even will get the chance to accomplish their goals/fulfill their dreams. That, my dears, is the definition of isolation - and it is absolutely depressing.

To watch the world pass you by without a second thought, sucks. Sure, you go out and do things, run errands and stuff - trying to keep as busy as possible in a futile attempt to feel like a productive member of society… to feel normal. Hell, to feel like you have some kind of say in the disease process: like you still have some sort of control. Yet, the lack of random messages/calls to hang out (especially, the pictures and status updates of loved ones) are cold reality checks, reminding you that you missed out and your world is getting smaller.

Don’t be fooled by the projection of strength and indifference. Those who endure the above, don’t want their loved ones to feel obligated to include them in every single event… neither do they wish for them to feel guilty for living life. That’s a huge no-no. We may suck in the health department, but some of us are decent human beings (although a tad bit envious at times), and are eager to hear tales of the coveted “outside world”/latest gossip and jokes from their peers.

However, I want to project unto you, the necessity of awareness. Don’t rely on words, because they may not come and often times are unnecessary. Instead, understand the silence. For if you cannot gather information in silence, then there is no way you will understand anything that is said. Especially, if an individual, such as myself, is great at the written word, yet horrible with the spoken word - therefore, unable to speak in coherent sentences, the majority of the time.

And please, please be mindful what you project unto anyone who is battling against disease/living with disability. Meaning: don’t walk on eggshells, just be considerate. Don’t assume that because you are coming from a place of love, exempts you from responses varying from angry looks/verbal backlash, up to emotional withdraw. Understand that the person you’re interacting with is still human. He/she is not the embodiment of their disease/disability, despite physical manifestations. Be genuine, and treat everyone with equal respect of person-hood.

.... Just don’t be an ass-hat: it's as simple as that...