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...

"Do, or do not... there is no TRY" - Yoda

The difference is in the act of trying. To earnestly attempt a task previously overlooked/not thought of despite the finite moments in any given day. This is the difference between healthcare as it should be, and what it is realistically. It is no surprise that American healthcare is in shambles. A third of the U.S. GDP (gross domestic product – the market value of recognized goods and services a nation produces over a given time frame) is healthcare.

Corporations are purchasing clinics and hospitals. There are instances where physicians are opting to close the doors of their practices and either retiring, or, joining ranks among the hospital staff. Healthcare is becoming a monopolized business, rather than the “Mom and Pop” solo/joint private practices of years past. Americans are also demanding more services, and insurance companies are appropriating more dollars toward sick care rather than preventative care – aspects that are questionable. Now, I’m not denying the presence of the business aspect of practicing medicine. After all, labor costs of employing support staff and supply costs are the two largest expenditures of any business, whether it is a restaurant or small clinic. Then, there are building/maintenance costs, utilities, etc. etc. However, that only makes up a portion of healthcare. It’s important to make a living while ensuring one’s business remains viable; yet, so is remembering those who are the reason for business: patients.

Our healthcare is in dire straits. Yet, not much headway is being made to quell the screams of healthcare professionals and patients. Nurses and physicians are over worked. The intended purpose of support staff such as medical assistants, physician assistants, nurse assistants, etc., is failing. It has become impossible to meet a demand that is increasing exponentially, daily. Medical schools aren’t increasing their enrollment numbers, just as the number of medical schools in the U.S. haven’t been keeping pace. Matriculated medical students are choosing to specialize/sub-specialize rather than go into primary care, as reimbursement for services rendered is better than the former and greater income means paying off nearly two to three hundred grand in student loans, sooner. It takes years of primary schooling, an average of four years of university studies, and four years of medical school (unless one is a part of the PH.D/MD program, then, this number is increased by one year) just to earn one’s medical degree… this is not taking into account the additional 3-6 years of residency (depending on specialty) – or, any additional training years for those in fellowship (sub-specializing) – before one is a fully board certified physician. Therefore, I ask: where is the incentive to become a doctor? After all is said and done, how has the healthcare field not imploded upon itself, in totality? How are we not roasting marshmallows over the burning rubble of the U.S. healthcare system?

I am an advocate for patients and doctors, not professionally, but on a personal level. I am studying to be a physician while undergoing rigorous testing to shed light on what is causing my health to fail. Therefore, I am not a stranger to either side of the argument. Physicians aren’t allowed to be healers, and few patients have a strong doctor-patient relationship with their treating physician(s). It also seems that the media has pitted doctors and patients against each other, and it is unfortunate because the true culprits are neither party. Yes, there are horrible doctors, just as there are patients – several of them – who are the devil incarnate. The question is what makes these individuals horrible: a piss poor outlook on life in general? Depression/mental health problems that are under/untreated? Substance abuse? Debilitating illness/pain? Sleep deprivation? Physical abuse? Socioeconomic standing?

As a populous, we forget to remember our shared humanity. First and foremost, doctors are human beings: what makes them bleed makes you bleed as well. Under the lab coats/scrubs/professional garb, is a living and breathing person who functions the same. However, they are tasked with ensuring that the quality of life/health of their patients doesn’t go to shit; whereas, the patient’s primary responsibility is to recite an accurate history and be compliant with treatment (in a perfect world, at least). Physicians deal with quite a bit of stress, on a daily basis (insurance, time constraints, etc. etc.). On top of that, imagine having to learn that sometimes “helping others” means helping another die with dignity, or, help someone maximize their quality of life with whatever chronic condition he/she has, which is counter-intuitive to why many choose to become doctors in the first place. Imagine the frustration, when more times than one cares to acknowledge, having to deal with a patient who doesn’t truly want help/refuses to help themselves. Now, add Big Pharma hounding you to prescribe their drugs, insurance/government aid red tape, etc., screaming patients, phone calls, and all that jazz into the equation. Running a practice/being a physician is the most stressful – and most rewarding – process. So please, if your doctor(s) enter into the examining room with a genuine smile and still looks “put together”, thank them (and your lucky stars, because you’ve got a good one).

As for patients: yes, navigating healthcare is the cause of several spikes in blood pressure/foul moods. Medical terminology is a language unto its own, and it can be aggravating when the physician forgets to switch gears, and speak human. As a pre-med student, trust me, learning the language is just as annoying (although awesome at the same time, because it’s like having a secret code). There are several different terms to describe one frackin’ process. So, yes, I more than understand your frustration/confusion. However, physicians have spent the greater part of their adult life/working life using medical terms on a regular basis among their peers. Also, it is their job to demonstrate the correct terminology not only among colleagues, but with their patients. However, with patients, the challenge is effectively translating the subject matter into something that is coherent/easy to understand (not as simple as it seems, and takes tons of practice).

As a “professional patient”, the single most irritating/de-humanizing aspect about the medical field is being cared for by a physician that needed to either: a) not have become a doctor (or even thought of being one) in the first place; b) fails/refuses to leave their profession for whatever reason, when it is clear they hate their job; and my personal favorite, c) are so reliant on statistics, that they fail to think critically - so when a patient doesn't fit within a specific statistical picture, theses type of doctors resort to medical cop-outs/stereotypes (despite historical data demonstrating the opposite is true)... These individuals do a major disservice to their profession and the patients they treat. Not only do they add insult to injury, but they are dangerous. I hate, hate, doctors who have become so jaded that they either forget their shared humanity with their patients, or, don’t give a shit altogether. With the first instance, I am able move past it, as we all get this way from time to time (the key is to recognize those instances and take appropriate measures to quell the resulting attitude). However, the latter is something I don’t put up with, and have called out physicians who behaved this way… then, I made sure not to be a patient of theirs’ from that point, onward. Why waist time and resources on a dead horse? It's dead; move on....

Dealing with humanity is a pain in the ass, no matter one’s job. Yet, a line needs to be drawn. It is a necessity for health care professionals and patients to be united, in order to change our health care system for the better. We must figure out a happy medium, and take back the reigns. More importantly, we need to model the behaviors we wish to see.

Physicians: this means if you wish for an open and honest doctor-patient relationship, where your patients are actively engaged in their care, then you must demonstrate your willingness to uphold such a relationship; you must share your passion with your patients. It’s not enough to go through the motions of knocking on the examining room door, standard greeting/questions, and checking off boxes – you know this, and so do your patients. Therefore, do something about it.

Patients: if you want your doctor to feel the urgency/concern you do, and wish for a seamless doctor-patient relationship, then you must – from the very beginning – be completely honest. Don’t assume that just because you are a paying customer (insurance/government aid programs contract with doctors at a deep discount, so really, you are benefiting from discounted services – not the doctor) doesn’t mean you are entitled to the royal treatment. It is your responsibility to establish the benefit of the doubt, not the other way around. Lying/being an asshole (whether an effect of a history of horrible experiences or not), is counterproductive. Also, when a physician prescribes you a treatment/asks you to try something, do it 100%.

Yes, I recognize that this is easier said than done. However, what is worth having requires work. Sometimes, it takes proving a negative (or several) to get the desired result. All we have to do is try.

It is a Marathon; NOT a Race...

Directions generally are useful creatures; yet, they mean little without a working knowledge of geography and preparation. Neither does it take into account possible detours/delays. The road to diagnosis and confirmation of speculation/suspicions can only be described as the paramount of a marathon road trip - with as much detours, delays, and endless stretch of road as traveling from east to west presents. To those of you who have ever been the passenger in such a vehicle (such as the one I find myself strapped into) and have taken/are taking the journey I am, then you understand the harrowing trip I am describing.

There is no question about it: this is a marathon; NOT a race....

Endurance is key – as impatience has no place in medicine. Instant gratification does not exist in the world of diagnosing complicated cases. Hell, science can't lay claim to any land-speed records. Reckless disregard for the process of confirmation of one's suspicions/speculation from the outcome of a specific test, only results in substandard care and dire consequences. Yet, idle babble/thumb-twiddling is just as harmful – this is commonly termed as: watchful waiting…. As in, let’s wait for the other shoe to drop so that symptoms can be matched to the etiology (in other words: the cause).

There is a balance between the "wait and see" attitude, and that of a doer: testing, research, conferring upon other treating physicians - gathering as much information as possible, because "Pin the Tail on the Patient" is not a particularly fun game to play. There must be no shadow of doubt lurking about, when the gavel slams down, punctuating the sentence – binding the diagnosis to the patient in medical matrimony.

What does all this mean? - Well, in my case it means:

• The newest UT Southwestern physician, who specializes in/conducts research in neuromuscular/metabolic disorders, has no clue what the heck is causing the health suck I’ve been living with for years. This makes the grand total of physicians who are dumbfounded: six.

• It was presumed that I had mitochondrial myopathy (a specific metabolic disease that my referring UTSW pulmonologists suspected due to the specifics of the first CPEX yours truly underwent in July)..... Well, after a repeat CPEX and a muscle biopsy ordered by the newest UTSW physician, along with a multitude of blood work (to test for other metabolic disease, just in case), mito – for short – has been ruled out.

-    despite that it is hard to diagnose, and that there isn’t a gold standard test to confirm it. Not one.

SO....

• While I’m waiting to matched with my medical husband, so to speak, I get the sublime pleasure of being mildly electrocuted (an EMG – not a traditional one – a repetitive stimulation/single muscle fiber stimulation version)… to see if specific muscles tested, fatigue/don’t communicate with the nerves. *sigh*

ANYWAY....

I could go on and on, but y’all should get the get the picture quite clearly: formulating some kind of clinical picture, that is hopefully clear cut, is a pain in the ass. Unfortunately for me, the clinical picture is a dung heap. It smells, and is only useful for the dung beetle pushing it and flies that swarm around it…. I digress: unearthing a diagnosis is Hell. Pure, unadulterated Hell.

To those of you who are novices: buckle up. The road to finding out what is wreaking havoc within your body is laden with hazards adrenalin junkies drool over (minus the medical bullshit, of course). Also, establish your happy place. Sure, that may sound like a stupid suggestion, but after your first whirl with the whore that is medical diagnostics, you will understand the necessity of a place full of fluff, sunshine, and all around awesome, to replenish your spirits. This includes creating playlists that fits each situation: the bad health day playlist; the “Hey, I feel somewhat human” playlist; the “It’s game-time” playlist; the “Fuck you world/ fuck you doctors/ fuck you disease that I wish would die a thousand horrible deaths” playlist; etc. etc.

More important than the above mentioned happy place and embellished playlists: the establishment of a tight knit support group. Role your eyes, groan, or cringe all you want, but you are going to need loved ones present. Preferably family/friends you don’t wish for the universe to swallow up (as in: you are more than happy to share the planet with these people), and can rely on – whether it is for emotional support, or to accompany you to appointments/testing… even to help you when are unable to care for yourself. Those you choose, should be individuals you don’t mind knowing the medical/emotional intricacies of your life. I cannot stress just how important having a tight-knit network to keep you firmly anchored in the present while sailing through the unknown, is. You are going to be entering into a world unto its own: both a part of and separate from the outside world – you are going to need support more than you can know at this point in time.

• I say this, because I – and several in similar situations – live this life. My life encompasses that of a university student, a blue-collared worker (well, for as long as I can, at least), and a patient of a stupid amount of physicians in a ridiculously whirlwind of a research facility/teaching hospital/clinic. Most days I am barely treading water. It’s thanks to a select few, that I have my wits about me.

However, you must choose carefully. While you are not a stranger to dealing with the intricacies of being chronically/seriously ill, those you choose to share this journey with: are. Remember that, always.

For them to watch you, someone they deeply care about/love, endure what you do: is hard. The feeling of helplessness is so very potent. Not only that, but your health struggles will remind them of their own mortality (just as much as it reminds them of yours – even though they’ll never admit it): it will make them question so much. And the fear, my goodness… your support group needs to be filled with those who are resilient; who, while perhaps uncomfortable, care more about you – the beautiful soul living and breathing before them – than their own discomfort. Those who see you as a fellow human being: not as a mutated/perpetually sick oddity.

•  But be forewarned: the length of friendship doesn’t correlate to strength. Neither is blood thicker than water, in this context. There are going to be times when family will do/say things that will initiate the “slap-a-dumbass” reflex; there will be friends who will disappear off the face of the planet, only to miraculously pop into existence when things appear to be “stable” (though, some will just disappear indefinitely – and that’s okay, let them go). You’ll be pleasantly and unpleasantly surprised – as it is often times, the ones you’ve known the least amount of time who rise to the challenge, and absolutely shine.

Most importantly, be a friend to yourself first. Be kind, be generous, and be thoughtful. This journey is hard enough – don’t add more suck to it. Remember you are merely human, and it is absolutely, 100% acceptable to feel what you feel. Don’t strive to exude strength at every second of the day – it’s exhausting, and you are only torturing yourself. Weakness is not giving into your emotions: it is refusing to be anything but honest – with yourself, with your doctors, and with those you love. Be who you need to be at that moment. No more… no less….

• Also, try to remember that those around you – be it your loved ones, or the curious/nosey bunch – mean no harm. So, when you are in one of those “fuck off” states of mind, because hey: it sucks being chronically/severely ill (and no one is contesting it – well those with a brain at least), don’t eat anyone alive. Remember their humanity. Besides, it’s not worth the energy.

Lastly, take a deep breath and slowly blow it out. Once you get the hang of the medical side of life – with the help of those you trust/love – your footing will be steady. You are going to do just fine.

How do I know this? – Because this is a marathon; not at race.