Most of us have heard the saying “all that glitters is not gold” at some point in life, right? Growing up I would hear that saying all the time. Whenever I would note how beautiful an actress or singer was, my parents would recite that saying. If I mentioned how nice someone looked or how talented someone seemed, I would hear that saying. I began to hear that saying so often that I eventually hated it. It was as if that saying started to haunt me, like life was determined to ensure I did not forget the important lesson within the saying.
On its face, that saying appears pretty straight forward. But, when you dig deeper you quickly begin to see the complexity of it. That saying takes several life lessons and neatly breaks them down and repackages them into six simple words. One may read the saying “all that glitters is not gold” as noting that one should never judge a book by its cover. Another person may believe that saying means there may be more than what the eye can see. I believe that saying is actually a warning that the eye is not always accurate. Simply put, a deeper look may reveal a flaw or imperfection in something, that the eye has previously deemed perfect.
Not to brag, but I consider myself a pretty attractive woman. I have a nice slender build, good sense of fashion, nice healthy skin, high cheekbones, and a nice smile that contains all my teeth. Externally, I look SNATCHED…or so I’m told. I go to extraordinary lengths to look great, despite how I feel inside. So much so that people frequently ask me how often I exercise or request my diet tips. My personal favorite is when people say, “OMG you look amazing. I hate you for being so thin after having two kids. You must work out like crazy.” I usually smile and sarcastically respond “well, the crohn’s weight loss diet is second only to the tape worm diet.” In response to that, I usually receive a horrified blank stare and uncomfortable grin…followed by the person backing away slowly.
See, that is one of the frustrating things about living with something like crohn’s, ulcerative colitis, lupus, MS, fibromyalgia, or any other auto-immune disease. Externally you look fairly decent, despite the internal torture and pain. Basically, your illness is invisible to most eyes. The invisible nature of the illness then makes it very difficult for people to acknowledge, appreciate, or understand the extent to which you are suffering. This in turn results in sometimes well meaning people or rude people, making inappropriate or insensitive comments. Having experienced this frequently in the early days of my diagnosis, I am now able to appropriately address the comments…but in 2011 shortly after my diagnosis with crohn’s, that was not the case. I still cringe when I think about how frustrated I used to get when I heard inappropriate comments or received ridiculous questions the first year following my crohn’s diagnosis. I became so frustrated that I went on what I called the “Crohn’s Education Tour.” I decided that any unfortunate soul that mistakenly made a comment about how amazing I looked despite my illness, would suffer the wrath of crohn’s education my way. It became my personal mission to teach everyone I came in contact with that “everything that glitters is not gold”. I spent several hours developing planned responses for anticipated comments and questions. For example, if someone said “well, how bad can crohn’s be you look amazing” or “give me crohn’s any day if it means I could drop these pounds.” I would give my signature crooked grin and respond “well nothing drops the pounds like taking a dump 20 times a day” or “you too could be thin if you get blessed with a illness that robs your body of nutrients virtually starving you to death if untreated. Come on, energy is overrated when you look this hot!” Needless to say, 2011 was a year of isolation, ruined relationships, and vicious rumors about some deranged woman yelling at strangers that often times never spoke directly to her.
In 2011, I had no idea just how angry and bitter I had become after receiving my diagnosis. While I believed I handled the crohn’s diagnosis with grace, I actually became bitter and unleashed my fury on everyone around me. Looking back, my “Crohn’s Education Tour” should’ve been called the “Bitterness Convention”. See, in my effort to educate, I isolated. I allowed my perceptions of people’s perceptions of me, to make me bitter. Yes, you read that correctly and yes it is as ridiculous as it reads but it’s true. Now, in fairness to myself, not all of my remarks were unjustified. Let’s face it, there are misconceptions in this world about what illness looks like. Given this, it is very common for people battling auto-immune disorders to receive crude and inappropriate comments or find themselves having to prove that they are actually sick. But, it is also true that a lot of people in our society do not understand these invisible illnesses and sometimes pose questions or make comments to gain more information. Rather than try to distinguish between the two, I have decided to treat both as requests for more information and raise awareness about the auto-immune disorders I struggle with whenever given an opportunity. Friends, I would encourage you to do the same.