My plan to not tell a soul about my pain filled body was flawless, until about the age of 14. During that time I hurt my hand in a babysitting accident, and it just wouldn't stop hurting. It wasn't the typical ache I always felt. It was this stinging, burning pain, which was added on to every time my hand even brushed up against something. (I later learned that what I was feeling was nerve pain). I saw my Regular Dr, who refereed me to a specialist, which snow balled into me Seeing a countless number of Drs because none of them new what was wrong. At each appointment something inside me would scream " Tell them about the other parts of your body that have always hurt!" But I didn't dare. I didn't want to be that kid who for the rest of my life was bounced around from Drs office from Drs office. I didn't want my childhood fear to come true and end up being labeled " Magee the freak " for the rest of my days.
But when a Dr at the children's hospital said he knew what was wrong with my hand ( that I had RND as a result from an injury) and that he was pretty sure he knew how to fix it. The words I'd been holding on to for so long escaped my mouth, and with pleading eyes I nervously stated. "Umm other parts of me hurt to. Like my legs, Since I was little my legs and other parts of me, just have always hurt... Do you think you could fix those to?"
I didn't know it when I said it. But That statement, would change my entire life.
From that day on I became completely emerged in the world of being a patient. I went from wading in the start of the kiddie pool, to being thrown in the deep end. I began to see Drs on a regular basis. I went from taking just an allergy med every day, to what seemed like being handed a new medication each time I saw a Dr.
It seemed like every time I went to a medical place, I had needles shoved in my arm so nurses could take little vials of my blood. At hospitals I was placed in all these random machines. Drs who seemed to be all sorts of "Oligist" were asking me, to rate my pain on a scale from 1-10, How long my morning stiffness lasted, and if I was experiencing muscle, joint, tendon, or nerve pain.. In the beginning I didn't know pain could have a number, or a Type, From what I understood pain just was just anything that was painful.. I wondered how some people were lucky enough to only have stiffness in the mornings! I was stiff all the time, But it did get a little better a few hours after I got up and moving. But I didn't have this magic stiffness that just went away!
Each new Dr I saw threw these giant words at me, saying that it might be what's wrong. ( And believe me, that is TERRIFYING! Half the time it sounded like they were speaking some special brand of jiberesh! I had to learn quickly how neasecary it is to ask questions. )
A perfect example of this is, I remember one time at a children's hospital when I was about in 7th grade the Dr thought that I might have Marfan's Syndrome.. I asked him what that was, and he responded, " Well that was the disease Abraham Lincoln had." From what my 14 year old brain could recall, Abraham Lincoln had a disease that made him ugly. I remember looking to the Dr with a completely mortified look on my face and asking .. Do I LOOK like I have Marfan's syndrome?! That's what made Abe Lincoln ugly right?!
The Dr busted up laughing and had to explain to me that he thought I might have Marfan's because I was really tall, not deformed.
With each Dr and specialist I saw , each one had a different opinion. But they showed me at a young age, that there are 2 types of doctors that treat you 2 different ways when you are a patient. Type 1 doctors will treat you as a list of aliments, a chore instead of a person. ( There basically an emotion empires walking medical dictionary, who thinks that they are the coolest thing that happened to this earth since sliced bread) They won't take the time to get to know you, make you feel comfortable and make a scary situation less terrifying. They just add to the fear. Sadly about 70% of the doctors I saw during this time of my life were these kind of doctors
But the doctors who have truly changed my life are type 2 doctors.
( This is the kind of Doctor my default Doctor is. ) These are the type who truly care.Who make jokes during the visit, ask about your life, make you feel comfortable, For example at the first appt I had with a rhuamtolgigisf at a children's hospital, he could tell my little 14 year old body was racked with nerves, because my blood pressure was super high. The doctor took the time to talk with me. make me laugh, and calm my nerves, and then when I he could tell I wasn't a big bundle of nerves anymore. He told that when the nurse puts the blood pressure cuff back on me, he wants me to close my eyes, take a breath, release it slowly; and envision ice cream. And then my eyes were closed, he would randomly whisper the word ice cream as I got my blood pressure retaken. This Dr knew his stuff, but he took the time treated with kindness and humor every time he saw me. I think in the long run, that is why I trusted him enough to tell him my secret. Type 2 doctors constantly show you that to them you are more than just a patient , more than just a job or a chore. That they honestly and truly care about you.
This kind of doctor is exactly the kind of person you want fighting for you.
My immediate family new about the extent of how long I had truly lived with pain till after I told my "secret" in the Drs office. I told a couple teachers the bear minimum about what was going on so they would help me catch up when I had to miss school. I still didn't dare tell my friends the truth. When it came to keeping my secret I had to keep on making more excuses to my friends about why I was gone so much, and why I " couldn't come to that thing after school". I couldn't tell them that my body hurt to bad to come, and the pain was the reason I quit dance class. I honestly didn't know if my friends they would still want to be my friend if they knew the truth. The biggest part of me feared that if the news of my medical problems came out. I would never keep the life and the reputation I had worked so hard for. I was seen as the funny, kind, outgoing, girl who loved singing and dogs. I didn't want to be seen for my illness, I didn't want to have my identity become the thing I honestly hated about myself
So I even though it was hard, I kept my secret as well as I could, I adjusted to my new normal.
When life threw me in the deep end, instead of sinking, I learned how to swim.
As soon as I got use to the waters I was wading in, My whole life changed in one day. When during my freshmen year of high school when a drama director at the school , some I trusted with my secret, outed my medical problems out infront of the whole cast.
But that is a story for another time.
Keep reading, and always smile on!
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