Social expectations quickly became the first part in my awakening when living with a chronic illness. Diagnosed at eighteen was to be altered at such a crucial part in human progression; graduating high school and going off to college. It stared me directly in the face everyday because I was diagnosed almost directly after my high school graduation, barely living through it in the first place. In fact, the conversation about not being able to walk, or climb the steps necessary at the ceremony sparked a bigger discussion that something serious was happening in body. After my diagnosis in July of 2010, I was on bed rest and only half listening to what doctors were saying. “This is not curable” ” you will probably need a transplant” and “you will never have children” were nonsense to me…until school resumed and I watched everyone I knew pick up their responsibilities, and truck forward on the good path of societal expectations while I waved “bye.”
I would eventually go back to school a year later, and keep myself busy for a good chunk of time. Dissecting cats in Anatomy and Physiology, standing with pitting edema in my feet – too swollen for my own shoes. Walking so far to get to classes that I was counting my blessings the whole way there in hopes I didn’t blackout.The horror I felt within learning that I was actually sick, and an instructor one day yelling at me for using my handicap plaque in a handicapped space because he too along with many others questioned my sickness.
When I started working in an elementary school I noticed how refreshing it can be to spend your day instructing kids, and to be actually taking care of them. Social expectations rocked my core once again because I knew I could never have this outside of the classroom. As I transferred into my early twenties and witnessed a vast group of friends having children, I struggled to hush my bitterness. The more I met men who wanted to talk kids, or expected that they could do what their best friends brother’s cousin was doing, which was having kids – the more dating felt like a minefield of “he’s not down with the sickness.”
The reality was finally washing over me that my life was always going to be a lot different – no matter how normal I could force myself to appear. My lungs and heart were going to do their best, but ultimately they are flawed. After attending the 2014 PHA Conference, my meltdown was past due. It was a strong stare into the reality of my affliction, and while it was empowering to be there with everyone – the trip home was the big drop ending in a roller coaster. I couldn’t return to function in such a society that had unrealistic expectations for me. Financial expectations of college degrees, buying cars, and buying homes. I had medical bills, and from what I was discovering peering over my Dad’s shoulder was disturbing of what it would cost to keep me alive. The social expectations of relationships, marriages, children – oh and as a woman the BODILY expectations of just having children; just being pregnant actually because the doctors were now using the word abortion – if pregnancy did happen.
Financial, social, and bodily expectations set my world distinctly apart from my age group. Isolation became a friend versus humans because of how I was taught to think about myself, and where I was expected to be with my life. I realized that I couldn’t live up to these social expectations, mentally or physically. So disturbed by the effects of how my body betrayed me, I could never see the world through the same frames of the people around me – it had vastly changed down to the functions in my brain. Life could no longer continue when I digested the fatal blow that my existence had endured and would endure with an incurable illness. Just to be breathing in this moment was lucky.
And I write today still on the road to acceptance of myself. Acceptance of my weight, my teeth, my mental health, my flaws, my tubing, the machine on the other end of it, my leopard spots, my extreme limits of living thanks to SSDI and all of it’s flawed glory, and my lungs. Those damn lungs.
Then I take a look around again, and I am aghast at my home, Rocco, my Polaroids, stash of MASH dvd’s, my collection of vinyl, my art that even some wonderful friends have sent, the fact that I am breathing right now, and it becomes an easier pill to swallow.
Society convinced me for a long time that I didn’t have the correct ingredients for happiness and success. Sometimes I will still catch my mind observing and critiquing myself in comparison to others with the conclusion that I have failed somehow. But through people’s empathy, and honesty about who they really are, and how different life can be for all of us, I have learned that there is no correct list for the makeup of happiness or success. That it is each so deeply personal to us, like fingerprints and DNA that my happiness could certainly never quite be yours. So what do your expectations of others mean? Quite frankly nothing. Expectations should only include health – mental and physical health.
My journey and life looks quite different from those around me – yet it fits like a glove. Other’s have made their own decisions for their happiness and it may seem strange to us but they are discovering what is in their makeup for happiness.
The key to accepting our disease is ultimately in accepting ourselves – through our own lens.
When I was diagnosed at eighteen my concept of my own mortality was extremely limited. I had been what society has deemed as an “adult” for not even a month, and incurable illness with a side effect of death was the furthest thing from my understanding. It was 2010 – there had to be a cure for this thing I had? My body had to adapt? I could probably still have my own children and live a “normal” life, right? Why is dad freaking out about insurance, and money? While these types of questions swirled inside of me, doctors were telling me to go “here” and “take these pills” which not surprisingly did absolutely nothing in helping me actually understand and cope with my terminal diagnosis.
I wouldn’t be living quite the image our world projects into our mind. In the beginning being extremely young and newly diagnosed, non-comprehension and denial was the happy fortress I had built for myself including this blog. I really convinced myself I had some sort of grasp on this disease. By fall of 2014, an extreme change to the inner workings of my system slowly consumed my entirety. I remember it clearly – waking up one day into a new darker world where nothing made sense, and life could not continue as it always had. Substance abuse, addiction, anger, paranoia, personality change, and even hair change (hahaha.) You could say denial was no longer comfortable. Suddenly I became so aware of my thinking, my surroundings, and of course my disease that societal expectations had convinced me was so irreparable, horrible, and straight up baggage. “You can’t have kids?” “How will you ever get married?” “How will you afford this?” “You know diseases in America are really expensive right?” “How will you ever live a normal life?”
This was my daily life, and I had prepared myself like a prospect at an interview; I possessed graceful answers to combat all of these intrusive questions perfectly…until my smile cracked, I actually began to really hear them, and wonder why exactly I was being told and asked such disturbing things? Why is my healthcare so expensive? Why does it matter if I get don’t get married? Why why why? The doctor appointments began to weigh heavily, the expectations to pile on top were soul crushing, and I was cracking up a little more everyday. I began to put on M*A*S*H daily to quietly sedate my toxic and self abusive mindset while weaning myself off of Xanax which at this point was keeping me sedated and goalless. My dad began to voice his concerns about a facility stay that would help get me back on track. I had been derailing since July of 2014 and it was now May 2015. This is when the Land of Enchantment silently urged me to migrate and surround myself with healing views of earth and not people.
New Mexico was a miracle – it helped me discover my passions, inner magic, and I also got the correct diagnosis of PTSD – a strong answer into why M*A*S*H is a mere static playing on a screen near me all the time keeping intrusive thoughts under control. If you’re wondering, “Why M*A*S*H?” then click here. New Mexico also put me with an incredibly advanced Pulmonary Hypertension team that combat the progression of my disease and near death with steps in not only medicine but mental health. My new doctor took time from day one to clearly explain my illness, organs, how my team works, what they do, expectations of me, and made an active choice to hear where I was struggling and responded with social care. Communication was a key ingredient within my new healthcare team.
“Communication doesn’t take place because you tell somebody something. It takes place when you observe them closely and track their ability to follow you. Communication is a group experience.”
Alan Alda, if i understood you would i have this look on my face 2017
This was the first facility where I was fully explained what disease inhabits my body, and genuinely heard when it came to my opinions – whether I could voice them or not.My compliance, arguments, fears, and body language were enough communication for professionals that were open minded and skilled in seeing them.This was the first facility where I was given a social worker as a part of my specialty team.
Because of these facts listed above, these doctors helped turn a very combative, non compliant patient into someone who listens, follows directions, is given choices clearly, and is actively working with doctors to save her own life which yes, took time. While that seems like a given and something every patient does, it is in fact NOT among a large portion of us patients for various reasons; addiction, anger, grief, denial, poverty or simple confusion. My belief is that reason lies at the hands of our mental health, awareness of trauma, healthcare system, and what Alan Alda has brought to my attention – our communication or lack there of. The sooner we start addressing the power of our own brains, and the pure power of real communication between doctors and their patients then we will begin to see a vast improvement in patients lives – as well as our medical providers.
As we all know – my love for Alan Alda extends far beyond M*A*S*H and I became a listener of his podcast, Clear and Vivid, because of it’s wonderful guests and in depth conversation that genuinely helps kick start my day. His three part series in season two on empathy and science grabbed my attention enough to start taking notes. My experiences first hand as a patient tossed around in a vast healthcare system had me taken aback in these mind bending episodes.
“Sympathy is feeling for someone – empathy is feeling with someone”
dr. helen riess
In episode five – Empathy and the Doctor Patient Relationship with Dr. Karl Vandevender, he discusses what he learned to be the four factors in attempting to help a human with an illness.
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the idea of dignity
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the concept of suffering
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the patient’s independence
· the patient’s feeling of being a burden
Did your mind just spin a bit? Because if these factors were to be brought into context when communicating with someone about their life altering illness, I strongly feel that the patient would have a firmer grasp in trying to cope with the truth that is disease and how it impedes your life in boundless ways. I’ve always preached on disease does not just exist in the confines of your doctors office or hospital room; It bleeds into every area of your life. When a new therapy was added to my treatment plan that required a monthly pregnancy test (I lived an hour away from a facility that could do that) I protested heavily that I would have to do this every month before receiving my prescription. My doctor called to discuss the reasons why we have to do this, and ended with “I know, you feel as though this disease is taking over your life.” That’s all it took in that moment for me to be quiet because my doctor could hear exactly what I was struggling with, and voiced it with me. I was understood. Beginning steps were in place of becoming a patient that would actually follow through on orders. These four factors are such a main and hidden focus of disease without our realization. We are so focused on pure survival (as well as the whole team) that we can’t see how we are struggling in other aspects. We do desire independence, dignity, and worrying about being a burden is a constant threat. Imagine if this was openly discussed when you were diagnosed? Would it have been helpful in fighting this disease mentally?
In episode four they dive into empathy and the science of emotion with Dr. Helen Riess in which they discuss how doctors have lost concern in patient’s emotions. They are worried about emotional empathy because they don’t want to be burdened by others emotions. When in fact how can you treat humans by trying to ignore and remove a very real part of the human experience – emotions? How do you expect Jane Doe to be a patient who follows through on treatment and appointments when she doesn’t value her own life, and doesn’t want to live anymore – therefore doesn’t want to help fight her disease? How do you approach this without emotion and empathy?
Diving further into empathy, we learn from Dr. Riess that empathy has cognitive (thinking) components and feeling (emotional) components. Doctors need self regulation skills (much like we all do and should be working on everyday!!) The key to self regulation is awareness; when to know you’ve been dis-regulated (feeling helpless, patient refusal, patient anger.) Knowing your triggers, and your responses – being aware with cognitive empathy. Dr. Riess concluded that doctors are not here to cry with you, but there to understand and learn more with you. A dis-regulated doctor and patient are not likely to be open to learning with each other. Doctors cannot remove the validating of their patient’s grief, anger, questions, or emotions and skip straight into treating only the disease. The brain is the most powerful and dominating organ. Treating the brain is a part of understanding your patient for a better outcome.
“This interplay of the emotional and the rational, I believe, is happening in the other persons mind when we try to explain something difficult, like science, or something that’s just difficult to absorb, like bad medical news. For someone to understand us, their mind and heart have to work together to resolve that inner conflict.”
alan alda, if i understood you would i have this look on my face 2017
After discussing so much of what doctors can do to help us – what can we do to help ourselves? While it seems easy to put all responsibility on our medical teams, we of course have to assume responsibility for our own brains and lives. Self care is a daily task whether it’s treating yourself or identifying triggers in a therapy session. Maybe it’s seeking out therapy to begin with, and realizing that it is often a painful drawn out process – not an instant cure after one session. Finding yourself angry, depressed, anxiety ridden is a beginning to realizing that your tank is not full, and professional help is needed. If you are confused at your appointments by the process, your insurance, medical information from your doctor – keep a notebook full of your questions and their answers. Communication is a two way street, and explaining to them that you are not understanding is OKAY! You are just as much in control because you are the patient!! A doctor that cares for you will want you to know what is happening, and wants you to help them help you.
I let my heart function drop, and came days within dying because I chose to take the anger I had towards my failing body out on my myself, my family, and my medical team. I had yet to come to grasps that my brain was severely traumatized, and communication and effort were beyond limited on my part. My extremely patient, clear, persistent, and emotionally aware team worked with me to save my life, and they were extremely successful, as my presence to write this article today is nothing short of a miracle; communication, and empathy saves lives. Open empathy, and communication within yourself is where your healing starts.
Compliance has been the center of attention when it comes to my healthcare. Big shocker here – but I wasn’t the most compliant patient until about a year ago. I ignored instructions, medications, phone calls, and ultimately hurt myself because of my refusal to accept my illness as it was.
A non compliant patient is usually an individual wrapped in denial, rage, sorrow and unresolved trauma. That entire package and more became my existence for at least seven years putting extra strain on my body, brain, and my healthcare team. I’m not quite sure if it was growing up, being paired with a perfectly matched specialty team, or receiving adequate therapy, but now I can proudly say that I am finally a patient that actually follows what the doctors want – and the proof is on paper.
Not wanting to listen to doctors, and follow through with orders for your well being will ultimately hurt you and damage your potential in opening new doors – like transplantation for example. “That’s crazy!” might be your reaction, but would you want to give precious organs to someone who might not take care of them versus another patient who will? That is just a glimpse into some of the tough decisions healthcare professionals have to make.
Being non-compliant might be your way of exerting control on a situation that you have absolutely no control over. I get it; you can decide yes or no, and ultimately you are the patient and in control. However, what is the point of suffering even more than you probably already are? Whats the point of self abuse – you didn’t ask for a terrible disease and I promise your doctors understand this…they are just trying to carry you across the finish line.
About three years ago when we decided to add Opsumit to my treatment plan, my doctor called to let me know that I would have to sit down with a specialty Gynecologist to get an approved for PH birth control plan, and I would have to be submitting a monthly pregnancy test. I protested heavily, and her response, “I know – you feel like this disease is completely taking over your life.” I could not have asked for a better reply to settle my mouth, and to hear my doctor vocalize what internally I was screaming.
My specialty team is complete with a social worker who works with nothing but Pulmonary Hypertension and Cystic Fibrosis patients. This made a lot of difference when it came to actually becoming healthy – mentally. I have always said your mental health will dominate your physical health – and I became that proof. My mental health was virtually ignored, I lived life within denial, and I almost died because of it. If you feel anger bubbling up as a reaction to orders, and find yourself in situations where it’s hard to follow through with what your doctor says – vocalize this to them. Your brain is an organ, and it needs it’s own upkeep just like your lungs and heart. Seeking out therapy to understand what’s keeping you from accepting your disease is a beginning step which will ultimately affect your overall health. I can’t stress it’s importance.
Doctors – if you have a non compliant patient, stop reacting in frustration and approach with solutions to get down to the bottom of the behavior. We often don’t even realize we’re non-compliant – we’re just humans who are tired of seeing the doctor and probably reacting in anger. Mental. Health. Professional. Find one, help them find one, make suggestions, and follow up. My social worker was emailing and calling to make sure I was seeking a therapist. It’s a lot, but we’re talking about life or death here.
This fight isn’t yours alone even when our experiences and stories are as personal as our fingerprints. Help yourself out of this hole of anger, and self abuse. Its a tough situation – choose relief.
Barely one month after being released from my hospital stay in February of 2017 someone messaged me that I was “doing it wrong.” Those words exactly, and that I needed to reflect more positivity. Resentful is an understatement that I felt within that moment, and every once in a while I still allow this intrusive message to continue to plague my thoughts. Yes, I have given it more power than I should, but the truth is that the message she sent actually does have a lot of power. In my weakest moments sometimes remembering that message is a deep cut.
You see, this hospital stay was an emergency admit, in the middle of peak tourism season in which I had just opened a store only a month prior, oh, and I sold flowers and Valentines Day was fourteen days away. Did you get all that? Exactly. I was trying to run a store almost four hours away, in severe heart failure, and I was in the ICU having a specialty team put a tube in my chest that would remain there forever. As far as I could see (which was through a filter of complete panic) my life was over. The doctors told me I was dying around the time I was finally doing something I had dreamed of, and it was interrupted in the most intense way. I was hospitalized eleven days; eleven days of constant beeping, cardiac alarms, palliative care, counseling, transplant doctors, and entire team staring at you and taking notes at least two times a day. That doesn’t include the insane pain, crying, nausea, and trauma. Eleven days I laid there barely making it out in time to immediately turn around and have everyone’s Valentine flowers done. I was extremely sick; I had lost around thirty pounds, was still throwing up around three in the morning every night, and being a new IV patient which includes learning about the machine as well as the medications attached to me. I was still extremely angry that I would get up to do something and would feel my pump slam down behind me, tugging my tubing. Or that showers now meant maneuvering tubing, and feeling the warm water hit a bunch of plastic taped to your chest. The reality was setting in that I was finally attached to a machine – my worst fear. My invisible disease was finally visible, and I was on the last leg of therapy – one step closer to organ transplantation. Okay, I’m done with the existential thoughts but you get the point.
I am just now comfortable with IV therapy…a full year and a half later. I finally mix seven cassettes to put in the fridge so I am changing my medication on time. I am finally taking care of my central line after losing my first. The road is just now gentle because that’s how long it took to accept my pump, work out all the technical kinks – and I am not alone. A lot of us PH’ers struggle with IV therapy, and years later it is common to still have a flood of emotion come over you causing you to be self-conscious about your disease, your body, and to be angry or sad. It is completely normal to suddenly “see” your pump for the first time in forever or to watch people swim and scream “WHY” inside your head. This will continue – not most days but it will happen at least one of those three hundred and sixty-five.
The point is, when I received this message I was only one. month. out. Need I repeat myself but barely a month – that’s not even the amount of time you need to even recover from the new medication. Your entire body has been invaded and is changing among a very powerful life altering drug running through it twenty-four seven. Your entire world has been shaken by trauma, paranoia about your own death and future, and you open your messages to see “you’re doing it wrong.” This is nothing against this person – because she is a good person, but to this day those words are penetrating and wrong themselves. However, they awoke me to the reality that she speaks for the common voice and attitude in America – and that’s a damn problem.
We often are so bothered by things that we can’t comprehend so we blanket them. Patients ourselves do it some time before we truly develop an understanding of our disease. If you have something serious, invasive, life threatening, or mortality awareness in general about you – you are blanketed, unfollowed, or reminded that you need to be happier. Instead of people volunteering to visit you in the pits of hell, they decide to pretend it doesn’t exist. The pain, and trauma you lived through is really a happy story – and you should be thankful. YES, IT IS but it is NOT RIGHT NOW. The right thing at the wrong time is still the wrong thing. Things need to be felt, acknowledged, and sort through. In a year it is a happy story, and a transcendent story of personal growth and pain, but right now it is barely escaping with my life. It is not okay to rush any kind of healing. It is not okay to pretend someone’s pain doesn’t exist because it makes you uncomfortable. We should be uncomfortable quite often in life – that is if we want to keep moving forward. Things that count, helping other people, feeling all the feelings often comes from a driving force of being uncomfortable, and wanting to change that.
Being diagnosed incredibly young has been a process of learning about mental health, trauma, and where I fit into in this society. A society that is obsessed with perfection – we can’t deny it. We would gladly drop a thousand dollars at Hobby Lobby making our home amazing to take Pinterest pictures for our Instagrams to prove to everyone how perfect we are. We all do it – all of us deep down wants to be a Pinterest perfect woman. Being a physical reminder that things are quite imperfect, medical bills are piling, and coverage is being threatened can have you cast out of a lot of situations when it comes to fitting into society. It is extremely hard to find a place for yourself when your reality clashes with their ideals. More and more I hear about PH’ers horrifying experiences of being corrected, made fun of, not welcome, and overall just not supported.
I get that we are unrelatable in a lot of aspects. Our pets are our only children, we post pictures of mixing our medicine, and maybe our stories on Instagram consist of hospital stays with the caption being a slight mental breakdown. We are literally looking death in the mirror everyday and trying to fight and cope with it. In a country where we have been deemed “too expensive” for medical coverage, and a “burned down house” AKA hopeless cause – difficult is an understatement. We would just like a little time to vent and be heard just like you get to after spilling coffee down your front on your way to a meeting with screaming kids in the backseat – only for us maybe it’s congress messing with our healthcare rights or our copayment is $4,000 this month. We just want to vent to our friends then move on to shopping at target too.
You can think we are doing it wrong, you can be that outside perspective and see that we are suffering, and you can do two things; you can send us a message saying “you’re doing it wrong.” OR you can send a lunch invite, and over a great meal ask, “How are you doing? How are you coping? What hobbies do you do for yourself? What was it like? Wow, tell me more about that?” like a human would. It’s really that simple.
Please save your criticism for real problems in this world, like healthcare, racism and misogyny. Please save your lousy Facebook messages, and trade them in for connection. We just need time to heal, real connection, laughter, company and we want to be heard – we are tired of being silenced by America’s expectation of normal.
Reactive is the exact word to describe my current self; a volcanic emotional eruption after years of collision, change, pressure, politics, and overall what gradually morphs into traumatic stress. Many would define the results after a life changing — or life threatening event, but what had I experienced? Just a “bad” diagnosis and a few pills honestly. Until almost six years later when I felt comparably to unraveling like a cheap sweater, and finally diagnosed with severe Post Traumatic Stress Disorder.
Only eighteen at the time of my Pulmonary Hypertension diagnosis, I did not fully comprehend what would happen to not only my body, but my entire existence. In those beginning phases I showed up to a vastly overwhelming amount of appointments, collected pills, listened to results, and attempted to force myself into continuing a life that at the time felt right for me. I believed that I would do what everyone else was doing; find a career, get married, have kids, and just endure within the definition of normal. I took the “your disease is terminal, you can’t have kids, your life will forever change” and shoved it to a deep dark corner titled denial. In it’s place I painted a brave portrait of a “strong, happy, chronically ill human” to obliterate my reality’s truth. I received quite a bit of compliments on doing so too utterly convincing my conscious and others that I was truly happy, and most of all okay.
I don’t even know how it happened, or when it happened. It was a daily transition into this anger, grief, and outraged person that I harvested a special hatred for. Deeply I felt compelled and pulled to be another individual who others, including myself, did not understand. Unpredictability, obsessed, overwhelming sad compiled with anger — Why was this happening? Despair and outrage will bring you to your knees only to find a crevice of that darkened place that only you thought erasable. The truth is unpalatable, alienating, and disturbing. Underneath it’s crushing embrace I collapsed into this final form of who I had no choice in becoming — I just am.
In simplest of terms, I am being held hostage by my own brain to be kept inside a “reactive mode” because I am experiencing anxiety related to a past traumatic event. The diagnosis of a terminal disease is traumatic. The paranoia of keeping my central line in tact as well as my pump, and mixing my medication is traumatic. The constant hospital stays, checkups, surgeries, and mandatory IV’s are traumatic. Healthcare coverage being a constant threat in America is traumatic. “Will I die from my disease, or without treatment?”
Wrapping your mind around the fact that you will have your organs replaced is indescribable — and just when you think you have escaped these continuous phrases of “you will have a normal life” — the line that doctors rely on for relaxation, you see Facebook updates of people having babies right next to your twenty-year old friend who succumbed to her fight with this disease. Just when you thought you could continue on with your Saturday morning cup of coffee you receive the news that the grant organization, Caring Voices Coalition, is no longer covering any expenses for your medication for 2018. How will you cover your $60,000 a month co pays?
Your perception of reality is a fight for survival which is vastly too intense for others, especially when reaction is what you are currently wired to produce in result of these perceived, and very evident threats. While I am currently seeking help so that I can improve my well being, I have broken down and transformed. I will never be the same because the skin which holds my body together has new tubes, scares, and shed repeatedly. It is okay to change amidst your survival.
I wish in this country we completely understood the toll of a disease on someone, and that the consequences bleed into all parts of our life: it is not contained to a hospital room. Someone who is chronically ill becomes limited not only by the failing body they are trapped in, but employment, relationships, insurance, housing and mentally — disease can envelope you. Chronically ill people are so anxious about current day America and their future that while taking care of these defeated organs we ignore the health and well being of one our most important; the brain. Why would a country of plenty make the checkups and healthcare of an important member such a challenge? Well, quite frankly, our lives are too expensive and non existent to begin with. What did you call us Senator Pat Toomey? Burned down houses I do believe?
While the intentions and thoughts behind caring about a chronically ill person are pure and vibrating from what we think could be a good place, we have to be willing and prepared to fully encompass the mental obscurity that will plague this human. It is an exhausting exchange of interactions in which patients are losing their sure footing among this journey. Their entire way of thinking, reactions, and beliefs are developing and brewing among damaged cells, treatments, therapies, and IV fluids.
I didn’t withstand a war around me, but instead within my own body. Developing trust issues against my own being and country takes up my free time, and flashbacks to moments in surgery or ICU that I would love to avoid forever. I live in terror because I know they are coming back with vengeance, generous strange organs, rib saws, and a high chance of death in the form of treatment…or lack thereof.
“Do you feel like you have quality of life?” was something asked by my palliative care nurse yesterday. Honestly, who could call this tube and machine attached to me “quality?”
I have been writing for almost five years about living with a terminal disease that is masked by this perceived normal, if you will, and the absolute frustration of everyday ignorance when it comes to people respecting and believing your reality. We are made out to be drama queens, negative, “too much”, and just about any other word humans would like to use as a buffer for their level of comfort. It’s an isolating feeling to know you are surrounded by people who will slap a prayer on a Facebook status, but will indirectly do what they can to keep your “suckage” far away from their steady life. It’s a dull feeling to know that you live among people who are contributing to the lack of early diagnosis problem by once again thinking you are just being dramatic, or negative. Patients literally die because they are told consistently that nothing is wrong.
Late January, death was on my mind quite frequently. My “end of life” wishes, and how they might find me in my home. I was having tachycardic episodes just even trying to pet Rocco, and found myself laying in the floor more often than not trying to calm my breathing, and move past that suffocating feeling. I knew what was coming; my invisible illness was working its way out.
After an almost two-week hospital stay, countless mental breakdowns, bruised arms, bruised hands, new nurse friends, and “mixing classes”- I walked away with a tube in my chest attached to a little machine. I never realized how many v-necks I own, or tops that lace up until I noticed a little white patch peeking out in the mirror. I have attempted to walk across my living room countless times before feeling a little tug reminding me that I am permanently bonded to this anchor. I forgot to enjoy just seeing my necklace resting against my bare chest, or how amazing my weird habit of rubbing my collar bones felt in which now my right one has a tube stretched over it.
Quite shockingly, the amount of “I didn’t know you were THIS sick” messages I received is more sickening than my heart failure in itself. I guess people really do want this justifiable evidence that you are in fact suffering which I guess seems understandable, but; while they see tubing they still don’t see the bills pile up for the expensive maintenance that is required to keep you alive. While they see your pump now they still don’t see you spending enormous amounts of time mixing your medication just right so you don’t accidentally kill yourself. While they see grumpy Facebook updates they don’t feel the mind numbing reality of laying in bed, throwing up, running to the bathroom every five seconds, and doing what you can to manage your pain level. While they see your spotty red rash along with your chest they don’t see your mini hospital that is quickly swallowing your cute home.
Congrats. You have your physical evidence. I am sick. My body is now reflecting its insides – and you know what? Despite whether Pulmonary Hypertension was visible to you or not, it has been this way for seven years – since day one of my diagnosis. It has always been this level of life altering since the moment they told me I did not have a good chance at a quality of life for long. It has been this horrible since the first echocardiogram when I was eighteen, or finding out I could never carry my own child. Open your eyes, listen to people, and gain some perspective on what sick means. The thought, and fact that you are stuck inside of a body that cannot carry you across the finish line, and that will cost you millions of dollars is realistic. You are allowed to feel this way; do not minimize your pain for others comfort.
While I realize I am NOT my disease, I find myself enveloped within it quite frequently. Instead of fighting it, I am making friends with it whether you can conveniently see that or not.
haley ann 