Or at least that's how it feels. Immediately you are unable to do this or that because you're sick. You become a pin cushion and a guinea pig about just as quickly. You will always be the person who will need to be helped along or be the exception in school deadlines or attendance. You become someone who has to be watched out for and looked after. It is, well, claustrophobic.
As soon as I got sick, every little thing I did, or wanted to do, was questioned. I wanted to try to play sports after a career ending injury? "Well... You're sick. Don't you think that's a bad idea?" I wanted to go out with friends a couple of days in a row? "Well, remember, you're sick. You're going to be exhausted." Yes. I am aware. Thank you. I wanted to become a "normal teenage/ young adult woman and start dating? "You're sick. Do you really think that is a good idea?" It makes me want scream.
As soon as I got engaged, I started hearing "Do you really think you should marry someone while you're sick? It's not really fair to him and I can't imagine it will be too easy on you." WHAT?! Fortunately, Paul doesn't put me in this box. He hasn't ever told me there isn't anything I can't do because of my illness. But if he didn't want to be in this, he wouldn't. Thankfully, Paul takes the lid off of the box that everyone puts me in, reaches down, and helps pull me back out. That is one exhausting job and he does it daily without ever complaining and I am forever grateful for it. He makes the air a little more fresh in this box and I feel like I can breathe. I have been really lucky with Paul. He never has put me there. He has never seen me as "the sick girl" and he will never truly understand what that means to me. Because from the day I got this diagnosis, everyone else has. Everyone else, including myself, has put limitations on what I can and can't do because of my illness.
Limitations = box.
I talked a couple posts ago about switching pain doctors and how excited I was and how great the appointment went. Well, that was short lived. We don't know what happened but that doctor left the practice unexpectedly. So I had to meet with a colleague of his for a NEW intake appointment to basically start over again. To say that that appointment was a nightmare would be an understatement. I spent an hour being criticized, belittled, and spoken down to in a demeaning way. It was terrible. I finally told him that I wouldn't be talked to the way that he was talking to me, that I likely knew more about CRPS than he did, and that I was done with the appointment. My reason for telling you this story is this. This is what the "Box of Chronic Illness" does to people: I had this doctor tell me this- "If I didn't read your chart, I would go as far as saying you might not have CRPS and here is why... you are doing too well to have CRPS... most people with this illness cringe when I just look at them and they just lay on a couch, on morphine, and are catered to. You finished school, are working full time, and are able to put shoes on, and use your hands."
This DOCTOR was about to try to UN-DIAGNOSE me based on this BOX! He specifically said that he didn't have any medical reasoning other than that I was just doing "too good" to have this illness. I was heated! Paul and my mom were at this horrendous appointment with me, and without them, the appointment probably would have gone a whole lot worse than it did. After this doctor tried to use this box to undo what about 5 different doctors had spent a lot of time (EIGHT YEARS) diagnosing and treating, Paul and my mom (bless their hearts!) both jumped in at the same time and said, "Lauren takes pride in that. Lauren has worked VERY hard to be functional with this illness. She has put a lot of time, energy, and work into making sure she finished school and can still work and still has use of all four of her affected limbs!"
I ended the visit by reminding him that I deserve better care than what he just provided, and then we left.
Needless to say, we all left deciding we would not be seeing him again. Because out of all of the people who shouldn't be putting me in that box, it should be my doctor who is TREATING MY CHRONIC ILLNESS.
I am just as guilty sometimes of putting myself if this box. On my days when I am not feeling very good, and I am questioning what God's plan for me with this illness can be, I open the lid of that box, and flop right inside... and I can promise it isn't graceful. It is ugly, there is crying, and the air begins to get humid again in the box.
But, like at the appointment, I am brought back by seeing a little light start to come in through the crack in the lid that Paul (or my mom) is lifting up. The air starts to get a little more fresh and a whole lot less humid. The tears begin to dry and all of a sudden things aren't nearly as claustrophobic. There is no more box.... not with who it matters anyways.