The Fears of the Chronically Ill

This is my contribution for the Patients for a Moment blog carnival, hosted by Selena of Oh my Aches and Pains! who asks: I want to hear about your fears: what they are, how you face them and what you do to overcome them.



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Well, I'm scared of driving, statues of animals, bugs that jump, oh, wait. Selena isn't asking about those fears, is she? No, she's asking about the fears that I really fear, the kind of fears that revolve around my health.

Death - The big one. It's not an uncommon fear as a whole, but the looming shadow of a scythe and a hooded figure has been a concern of mine for a number of years. It's more of a fear of premature death than anything else, but like I said, not wholly uncommon amongst even the healthiest of people.

Medical Upkeep - This is actually the fear that causes the most anxiety in my life. I can never, even for a split second, be without medical insurance in my life. Obtaining and maintaining insurance in not easy, in fact, it can be downright demeaning and stroke inducing with all of the questions, the restrictions each program puts on my life, the limitations, the rules, the paperwork, the soulless shuffling and judgment. It's pure, unadulterated hell for me. Nothing spins me into a full-blown anxiety attack like talking about how much I hate the bureaucracy part of health insurance.
What does it in for me is that I am not a temporarily ill person; I will always be "sick" on some level and I will always require insurance. Explaining this, explaining my health, my heart condition and what it "feels" like (most annoying question EVER) is like being asked to justify my existence to a firing squad. I am hopeful that many of you will never, ever have to go through this hell but for those of you who have - my deepest empathy.

Dependency - I don't know if I am a dependent person by nature, or situation. What I do know is that I have a desire to free myself from being dependent. I'm unhappy having to rely on my family for shelter and food, but this is necessary as I cannot make enough money at this point in time to support myself with rent, food, etc. My big fear with dependency is being dependent for the rest of my life. I do not want this; I do not want to live with my family forever. I want to spread my figurative wings and have my own home, my own family. I want to pay my own bills, decorate every room in my own house and be able to say I am the head of the household.

Unrealized Goals - I've always wanted a family of my own. A spouse and a gaggle of adopted kids. Living with my health, the dependency issues, the unable to make more than the bare minimum, it wells a fear so great in me I can easily cry thinking about it too much. To not achieve a family of my own, however small it may be, is something I cannot bear. Something that millions of people take for granted, and many often neglect or abuse, and I have to struggle for seems like the greater injustice than any other aspect of my life.

So, these are my fears that all relate to my health in some way or another. How do I overcome them? Well, I haven't. I just try to avoid the outcome I don't want or to figure out ways to keep living my life the way I want to and achieve as much happiness and personal success as I can.

A Letter to Medical Students

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Dear Baby Doctors,
This is an open letter to all of you med students, interns, and residents out there who are training to become real, full-fledged doctors; specifically those that will be dealing with patients living with a chronic illness. Like me. *grin* Think of this letter as a guide, as helpful tips and advice from the other side of the stethoscope.

1) Check your ego at the door
I know that House is all the rage on the boob tube, and don't get me wrong, I love me some Hugh Laurie but if you think you can get away with treating a patient like Gregory House treats his, think again. Grumpy, in-your-face, Vicodin popping, egomaniac doctors make for great television but a poor doctor IRL.

2) Newsflash: You are not God
Guess what? You are, in all likelihood, not going to cure me. Oh, sure, you'll probably be able to patch me up and get me to my next few birthdays - and trust me, I will thank you for it! - but as far as curing me, or most of my chronic illness friends? No. It's best that you learn this now and get used to the idea because I don't want you to beat yourself up later on. You do tremendous work and it isn't fair to anyone, especially yourselves, when you cannot meet unattainable expectations. It isn't about fixing us; it's about treatment and communication. If, by chance, you happen to sneeze into some petri dish and cure cancer or have an epiphany at 3:41 AM about how to rewire all of my innards, great. But don't hold your breath.

3) I want to like you, but I can't (initially)
I've had a rough time dealing with med students in my childhood. For years I was their guinea pig. I'm meeting you with a chip on my shoulder, a sour attitude and the stink-eye. I'm gonna eye you up and down gangsta style. All of this will be within the first thirty seconds while your attending (my doc) explains the extra body (that's you) in the room. If you follow the warm meet and greet as advised, though, my chip will crumble, my attitude will brighten and my eyes with gleam with welcome.

4) You are more afraid of me than I am of you
Just a fact. Doesn't have anything to do with you personally, merely that I am used to this dog and pony show.

5) It's all about relating
Frankly, I'm not impressed by your clean white coat with your name embroidered on it or the fact that your handwriting is on par with the Manson family, or how many meds you can potentially prescribe me. What will impress me is your knowledge of Harry Potter or the latest season of True Blood. You'll be my BFF then, bb.

6) Know Thyself
I know that you're all learned and stuff, but your chronic illness patient lives in their body 24/7 and some, like myself, have been living with their chronic illness since birth. That is a substantial amount of time to get to know ones body and become instinctual when shit hits the fan. It is vital for you to disregard all of that old school mumbo jumbo your hard-ass professor said when s/he told you that your patient knows dick. It is your position to team up with your patient, your NP and anyone else overseeing your patient and establish open, honest communication that includes you listening to what they are telling you about their body and you using all of that book learnin' to put the pieces of the puzzle together. Together, this combo will allow you to you give your patient the best possible treatment, which turns you into your life-saving alter-ego, SUPER DOCTOR! You won't have a cape or anything, but your awesome powers of communication, trust and honesty will endear your patients to you. Who knows, you may even get to save some lives along the way.

7) Warning: patient bites
My biggest beef with med students is the robotic way in which they have treated me in the past; like some lifeless, nameless specimen that was there right to poke and prod as they saw fit. Now? I bite back, so I as I've suggested before, greet your observation patient with a warm smile, a friendly handshake and some small talk. We'll not only love you for it; we'll remember your name and may even keep an eye/ear out for where you go. If you stick around the same hospital we attend, hey, we might just want to put you on our team. Isn't that something?

Well, I hope you're not too insulted (let's face it; this entire post is vengeance for all of those times when some smug 25 year old put the cold-ass end of a stethoscope against my skin and hissed at me when I cringed) and I hope, despite my brass, you learned something new (other than you never, ever want me for a patient). Remember: It's all about mutual respect, open communication, and knowing what's going on in the zany life of Sookie Stackhouse!

And if you are insulted...lighten up, it's my blog. Be thankful you haven't had your chest cavity sawed open four times and just watch this video of baby animals:

Baby Animals!

By the way: I'm totally available for in-person speeches about building healthy, sustainable doctor-patient relationships, emphasis on chronic illness patients! ;)