One of the most difficult obstacles I personally face with chronic illness is dealing with both a “sick” body and a very “healthy” mind. This could be turned the other way with mental illness (also chronic illness!) in which one’s mind is at odds with one’s body. It’s a constant state of turbulence in which your mind just goes and goes and goes but your body can only take so much.
Perhaps the most evident and “easiest” example to give of this is / was the inability to finish my undergraduate degree. Behcet’s is, at least to me, particularly insidious because it is known (at least in those of us who are HLA-B51+) to “attack” severely when a person is young. Many of the others I know with Behcet’s have very similar stories to mine – the disease kind of always lingered (for me, I always had mouth ulcers and nerve issues) and then reared its head around puberty (that’s when my nerve issues became very severe and I started to develop genital ulcers). It did calm down for a few years after my diagnosis at age 17 (if you’re “new” to this blog, I graduated high school a year early despite missing so much school: I combined my junior and senior years of high school into one year and this was also the year in which I was formally diagnosed), but then it went systemic in my early 20s just as I was about to graduate college / university.
I have always been extremely academically driven and my mind kind of makes me “who I am.” Before I became so ill, I wanted to pursue a “career” in academia, either in Literary Theory or a branch of Philosophy (likely either “Formal Logic” or “Epistemology”) and I was even offered a position in the PhD program at the university I attended without even having to apply. I did struggle throughout college with the various illnesses that were severe due to my Primary Immune Deficiency (PIDD), hypogammaglobulanemia, aka “Common Variable Immune Deficiency,” but it only put me behind by 1-2 semesters (in short, the year I had “gained” by graduating early was ultimately “evened out” by the school I had to miss due to very serious illnesses that would often knock me out of school entirely). However, in my “senior year,” with only 2 “major” classes and a few electives left to finish, the Behcet’s started to go ballistic – it went into my eyes, it went into my veins, it started attacking my nerves and CNS severely, and the joint pain (primarily in my right SI joint) was pain I would never wish on even the most cruel person in the world. In short, I had to leave school and go home because I ended up being just too sick to continue.
That was a lot of backstory (and probably redundant, so I do apologize!), but I just want to sort of sketch out the “picture” of what I mean when I say that with chronic illness there is a massive discrepancy between body and mind. I attended one of the best schools in the world and at almost no cost due to scholarships … and that was “taken” away from me just at the time when I was nearly finishing by this awful illness. My mind wanted to keep going but my body would not let me.
Although I am getting better as the years go on, the major problem of satiating a more than “healthy” and active mind while being “held back” by an ill body is an ongoing daily struggle. For me, knowing where I “COULD HAVE BEEN” (even having gone to medical school and being a physician now if I had not pursued the aforementioned subjects) if I just “weren’t ill” is something I try very hard not to think about because it is honestly devastating to me. Furthermore, thinking about it really accomplishes nothing other than upsetting myself, so in this case, thinking that way doesn’t achieve anything “positive.” It is that “default” zero / failure, if you will. I KNOW deep down somewhere that one day I will be able at least to finish my undergraduate degree. I am also extremely thankful that the time I have been GIVEN by this disease (these diseases) has taught me that I really am not “cut out” for academia. However, even given the “positives” that have arisen from my situation, the “negatives” and the FEARS for the future that arise from thinking about them dominate my perception. It is a very difficult thing to try to reconcile and it is a VERY DIFFICULT thing just to try to “wait out” because … well, I / we just really don’t have much of a choice.
I really hope there are those of you out there who have seen your chronic illness through to remission and have managed to “get on” with your life and “reunite” your healthy mind with a now-healthy body. That is one of the “biggest” things I can pray for regarding myself. It is a terribly difficult and painful issue to have to “deal with,” no matter how optimistic or hopeful you are … and to see the years pass and to see the “achievements” of others is difficult at best.
At any rate, I hope you are all having a happy and healthy Valentine’s Day! Today is the day my cat was rescued (he was found on Valentine’s Day many years ago (the “adoption group” that rescued him named him “Valentino” – just a little happy anecdote to lift the mood of this fairly dismal post!) – I am incredibly thankful for that little boy and I KNOW he is very thankful that I found him (he has a congenital heart disease that was undiagnosed when I adopted him; he has had to see a feline cardiologist and he still has to take medication 2x a day) because we have very much saved each others’ lives. I hope you all find some happiness in this day as well and I hope to be back soon soon soon!
❤ Always, Beth