Transitioning Between the Worlds of the Healthy and the Chronically Ill

Two years ago, I interned with a major accounting firm.  For eight weeks, I pushed my illnesses aside.  With only a few minor accomodations, I basically lived the life of a healthy (read: uninhibited) person.  My internship ended on August 10, 2007.  Within a few days, I had begun the usual round of doctor visits, began addressing the issue of which medicine(s) to try, and all the long days and stress I had pushed through caught up with me and I began to head toward a flare.  It was a mac truck to the forehead...I felt like I had been diagnosed for the first time all over again.  In only 2 months, I had forgotten what it was like to be the real, chronically ill, me.  For the first time, I sat down and wrote up my thoughts, and I would like to share them with you now.


8/14/2007
Today I went to a new rheumatologist, and emerged with scripts for three medications and one for repeat blood labs. The medicine for my dry mouth is the first step to saving my teeth, the muscle relaxant to relieve my back long enough to sleep, and the pain killer is to relieve my waking hours.

For eight weeks, I lived in the world of the healthy. I did not entirely lose myself (which in this case would be desirable) – I missed one day altogether, avoided physical participation in field day activities I would have jumped at in the past (back when I could jump), and almost invariably came home with hardly enough energy to eat dinner, and sometimes not even that. But these were minor. I wasn’t on any medications for my chronic conditions, and had in fact forgotten they were chronic at all. It was only eight weeks but that was enough time to sand down the sharp framework I usually live in. I feel like I’ve been diagnosed all over again.

Do I really need these things? Do I need all the drugs; can’t I skip the bloodwork and accept ignorance? As I say this my back clenches, and I know it’s only a matter of time before I come full circle, only this round would leave me with more permanent damage.

At least I can see the need for hope, and the skeleton of how it should look. If I go back to my customary systems of doctor visits, medication trials, and maybe even a few lifestyle changes, I do stand to gain some of the freedom I feel like I’m losing. If only I didn’t have to lose it first, or had a guarantee of its return. Irony can be unbearable, you know? I’m fighting so hard for the goal “to have a normal life, where I can do all the things I want to”. I think of all the things I have lined up for this semester at school – five classes (as opposed to my usual reduced load of four), my job, the societies I belong to, the increased work for the one I’m president of, and my favorite - developing awareness events on campus for invisible illnesses. But I have to choose between raising awareness of my illnesses and actually caring for them, because putting in the time to plan events will prevent me from trying to implement a necessary exercise routine, and staying out late to do assignments and have meetings will prevent me from having time to eat proper meals and get enough sleep. Maybe this too is temporary. Maybe one day I’ll have the luxury of focusing my energy on just awareness and self-care, with an assistant or staff to help shoulder the load. And maybe then it will be ok to say “someone else needs to work on this now, I have to go to the gym and get some sleep”. Or better yet, “time for my massage therapy”. That would be nice.

Maybe that’s what I want out of life – time. My mom’s fond of telling me that’s in my control now, I don’t have to take on what I do, I could focus my efforts down to one or two things. And it’s then that I revert inside to my ten year old emotions, and know I won’t give up my commitments or interests. I’d lose what makes me special, at least what I feel special about. It’s mine and they – it – my body – won’t take it away. I’ll probably die fighting. But that’s not much of a surprise, is it.