An Open Letter to the Doctor Who Did Not Understand

Thursday, February 26, 2015

An Open Letter to the Doctor Who Did Not Understand

Dear Doctor X:

I am going to assume that you remember who I am, but just in case, allow me to refresh your memory a little. I am that girl you saw a few weeks ago: the one who didn't make any sense. I am that homeschooler who's graduating a year early. I am that patient whose blood-work looked fine and yet could hardly walk on her own. I am that girl who has an obscure chronic illness that you really don't know much about.

Yes- that was me.

I am writing this letter today not just for myself, but on behalf of so many other people who are misunderstood. On behalf of all the homeschoolers, and the EDSers, and anyone living with some kind of chronic illness.

Because you, sir, made a few mistakes during the course of my office visit, and I feel that it's important these things be pointed out for future reference.

First, I would like to direct your attention towards my chosen method of schooling. I am, as you will remember, a 15 year-old, homeschooling junior in high-school. I am graduating a year ahead of most kids my age, and am planning (at least for the moment) to "go off" to college almost immediately after finishing high-school.

When you found out about this, I could tell you were puzzled, and I believe you jumped to some very wrong conclusions. From the confused expression on your face and the defensive tone in your voice as you asked me why I was "in such a hurry", I believe you may have thought that I was, perhaps, trying to get away from some troubling environment at home.

While I freely admit that our home is not perfect (whose is, after all?!), this "lack of perfection" is definitely not the motivation behind my graduating early, or my current decision to go off to college so soon. I first began homeschooling because my older sister had been homeschooled from the start due to her personality. I never had any problem with being homeschooled, and absolutely do not regret my mom's decision to do so.

One of my favorite things about being homeschooled is the flexibility in pacing. From the very beginning, my mom has made it clear to me that if I am comfortable with and enjoy a particular subject, I am free to work through it as quickly as I wish. Because school has always come easily to me (and actually been something I enjoy!), I worked through my pre-school/kindergarten program quite quickly, and by the time I got to first grade, I was actually at a second to third-grade level for most of my work. I don't say this to brag, but simply because it's the truth.

Because I was ahead and not in a public school system, I wasn't confined by my age. Since the first-grade work bored me, I moved up into second and third-grade classes. And because I had already learned all of the second to third grade classes by the time I was actually the appropriate age, I simply moved up to the third and fourth-grade classes.

And so on and so forth... I remained a school year ahead of most of my "peers", and here I am- a fifteen year-old junior in high-school.

Now that we've got the whole "homeschooling issue" out of the way (although I don't see why it should have been an "issue" in the first place), let's move on to the more important issues I want/need to bring up.

When we started talking to you about the health problems I was having, I began to get the impression that you simply do not know how to deal with patients like me.

I was, as you should know from both my medical file and our personal conversation, diagnosed with two chronic illnesses in the past 18-24 months. Both are known to cause severe fatigue and chronic pain, and despite not being traditionally "serious" (I'm not likely to die in the next few years because of them), they both dramatically alter life as we know it.

After getting sick, I was forced to reevaluate and readjust my life to accommodate this new "house guest." As much as I wanted to just go on with my life as I always had, my illness wouldn't let me. I could no longer be as active as I used to be, because overexerting myself would leave me hardly able to get out of bed the next day. I couldn't be spontaneous because every little thing had to be planned around my medication schedule, my hydration needs, and my decreased energy levels.

When I mentioned the fact that I hadn't yet gotten out of bed at 1 o'clock in the afternoon, you (trying to be funny) said, "What, were you lying in bed eating grapes?" To someone who longs to be crazy active again, this stung me in ways that very few things can.

No, I was not lying in bed being lazy just for the heck of it. I was busy doing my school-work, and the reason I hadn't gotten out of bed yet was because I knew I had to be somewhere later so I was trying to conserve my energy.

That's another thing about my illness- it has forced me to know, recognize, and actually pay attention to my limits. I used to be that kid who did everything. I was constantly rehearsing or learning lines for my next play. I was in dance class for hours every week, and watched my siblings in my spare time, all while keeping my grades up and attempting to learn the writing trade. 

Dr. X, I was that kid. I was the "teacher's pet." I was that kid who never complained when she had to work hard in class. I was that kid who pushed through sprained ankles and torn muscles. I was that girl who had to be forcibly kept from dancing while recovering from an appendectomy.

Do you realize how much humility it takes to admit that you're not strong anymore

Well let me tell you... It's a lot more difficult than you seem to believe

It's not some walk in the park, and I certainly don't enjoy being forced into the role of "sick girl", "tired girl", or "girl who isn't allowed to do anything." I certainly don't enjoy feeling like I'm constantly recovering from the flu, or being banned from the jobs that involve going up and down stairs. I certainly don't enjoy having everyone know that I'm not allowed to do any heavy-lifting. I certainly don't like fainting in front of my friends.

Do you really think, then, that I want uninformed doctors to insinuate I'm being lazy? You looked at my blood-work and my "brisk reflexes" and you knew I wasn't in immediate danger. You knew I wasn't dying, and you couldn't figure out how I could possibly be "so sick."

Please do not take this the wrong way, Dr. X... Do not mistake my snarky tone as anger towards you. I'm not mad at you. I am mad at our society for being a place that encourages thinking which leads to responses like yours. I am mad at the medical field for neglecting to educate doctors about the true affect chronic illness has on the person and not just the body.

You see, I understand that you don't "get it." I know that you don't know what it means to be sick but not dying

And really, you don't need to

But just trust me when I say that we're trying every bit as hard as you are...


If you could write a letter to anyone, who would it be, and what would you say? Be sure to let us know in the comment section below, over at my Facebook page, or email it to us at anastasiarosewrites[@]gmail[.]com!


101 Things- Counting Down

I have started making a time capsule [#16) with my best friend, and we'll hopefully get it finished this weekend! Also, still hard at work on my cranes. I'm 1/10th of the way there!

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  1. Hope he reads your letter and gives it the attention and respect it and you deserve.