Let’s face it, most hospitals are built a bit like a maze, or maybe it seems that way because you are unwell or hurt when you enter one. I always feel like I need to have some string or something laid out for me, as an escape route so to speak.
I don’t believe hospitals are built to be so confusing, but for me it always ends up being the case. No matter how many times I have been to the same hospital, or how many visits I make to the same area, I can still find myself all turned around in the place. For the record I have been known to walk around the entire hospital only to discover the first exit I had come to was in fact my exit. (Normally I am good with directions and having a sense of my own directions, not that you necessarily believe me after telling you I get lost in hospitals.)
I sometimes blame that weird ability lupus has which affects my cognitive skills, also known as brain fog for why I have gotten lost or confused when it comes to hospitals.. It tends to happen more so when I’m in a stressful or uncomfortable situation. Regardless of how it comes to be, when it hits I find myself struggling for words or stringing together thoughts into a logical sequence.
You would think I would know better than to try to attend my hospital appointments on my own, knowing that there is a good chance that I will end up doing a full tour of the floor prior to getting where I need to go. A smart person would certainly ensure that s/he has someone with her just in case. I, my friends, am not that smart of a person. I insist on managing my appointments all on my own, which is why I tend to arrive an hour before my scheduled time so I can do my usual getting lost and still make my appointment on time.
Today was no different than any other hospital visit, other than that today I ended up walking past my specialist’s door (which is clearly labeled for the record) not once, but three times before I realized that it was in fact his door. I was almost late because of this. The receptionist pointed out that I was not there ten minutes before the scheduled time, which is an expectation of this specialist, and therefore he had the right to refuse to see me. He is a kind man and understands things so he did no such thing. He also is fully aware that I walked past his office more than once because he could see it out of his window.
As I said, he is a kind man so when I got in to see him, he asked me if everything was okay. As usual I said everything was fine (I’m pretty sure my arm could be falling off and I’d still say everything is fine because that’s how my brain seems to work). He gently told me he had watched me walk past his office (a place I visit every two weeks for the record) and so something is clearly changed. And there it was, the time to admit that yes lupus does affect my ability to think clearly at times; a perfectly easy way to explain that there are more things than just my pain, lab work and joint issues going on with lupus.
A smart person would no doubt jump at this. As I said, I’m not all that smart because I told him everything was fine, I was just “preoccupied”. Thankfully he didn’t take that answer at face value, instead after discussing the latest test results, making adjustments to medications and such he turned the conversation back, ever so carefully back to my being preoccupied.
He didn’t’ say anything as I shakily told him about getting lost in the hospital, that the place is a huge maze for me. He listened carefully as I told him about reading his name on the door and not making the connection. And he suggested that perhaps we need to explore things a bit more as it is possible that this isn’t the normal lupus brain fog, but something else that is lupus related going on.
He made the appointments for me himself while writing down the arrangements on paper and sending me an email for later on. He reassured me and then, friends, he promised to be my string. True to his word, when the appointment was finished he walked me out to the door I needed to exit the hospital and promised to meet me for my neurologists appointment and scan next week.
And suddenly, although my heart is heavy and somewhere in my feet, I feel a bit of a weight is taken off me. I do not have to go through this alone, I am not expected to always be so strong. Loved ones have told me this before, but suddenly, coming from this doctor I realize that the only person who never gave me permission to put my fears into words is me. Now that I’ve put those fears into words I am a bit freer and I never have to worry about getting lost in the hospital again. All because someone knew me enough to know that while I couldn’t verbalize needing help, my actions said it all for me and that person let the actions be more than enough.