The ability to empathize is one thing but the ability to understand, truly and deeply, is another. Living with a chronic condition is in a word…lonely. And, when that condition is rare and ineptly acknowledged by the medical community, it makes the experience that much more unknowable. When the condition is also, for the most part, invisible, the experience is excruciating in its isolation. Sarcoidosis is both rare and in many cases invisible. It is also wildly misunderstood and misrepresented among many medical professionals. It is too often downplayed as not a big deal when in fact people do actually die from this disease.
What goes on my body is deep within the core of me. I can feel it but you cannot see it. There are no flames shooting from my burning nerve pain. There is no evidence of my lack of oxygen as I quietly gulp for air. My prickly aching feverish skin cannot be seen by the naked eye. You don’t see my pain, in part, because I have learned to smile through it, no need to make anyone feel terribly awkward about my discomfort and no desire for pity because of it, becomes the norm. The reality is that as many times as I valiantly attempt to explain my experience, you simply will not understand it from the outside looking in no matter what I say. This is partly because you simply don’t want to. It’s too real, too messy and doesn’t fit with the way things are supposed to be.
You can be supportive and kind and pat me on the back attempting to be encouraging but, you will not understand the depth of my toxic fear, the agonizing and endless uncertainty regarding my prognosis. Try as you might, you cannot feel the gravity of my situation, the way it pulls at my heart and vacates my hope. From the outside looking in, I seem the picture of health but I am actually as fragile as an eggshell ready to crack . I am as limp and thin as a wet paper towel. I am exhausted all the time. Every breath, every step, every thought takes the same effort as hard manual labor. My body feels l like I work on a the chain gang and I am in fact, imprisoned by my disease.
Should I expect you to understand from the outside looking in? Probably not. In fairness to you, this was something I know I did not understand until it crawled inside of me. So, don’t worry. You are off the hook. You are not expected to understand what you cannot know, what you cannot see, what you have not experienced yourself. I will continue trying, albeit with resigned effort, to explain it. I will do this because I need you to acknowledge it. I will do this because I have to. I will do this because I am compelled to. I will do this because even though you cannot understand truly, you can at least try.