There comes a time with sarcoidosis, when you finally realize that you are truly, utterly and completely alone with your disease and, in that moment you feel like the very life is being sucked out of you, like someone ripped inside your chest and tore out your heart. That moment when you realize life with a chronic disease has finally taken everything from you, even your last bit of denial that the support of the ones closest to you will fortify you through this journey, is the loneliest moment in the history of all moments in your life. With gut wrenching power, it forever changes your understanding of the exact nature of the fight you are in. The war you wage is solitary, a duel between only two…you and your disease. It’s also the first time you realize that you might not have the resolve to win the battle.
No amount of support from outsiders can ever make them fully understand the depth of your experience and when they let you down, as they surely will, and the realization hits you that you cannot expect them to understand, you feel grief akin to death. It’s not their fault they don’t understand because no one can unless they experience it. You can’t blame them for their lack of understanding and you don’t but, you do still feel a deep sorrow in the knowledge that your disease has abandoned you forever from the rest of the world around you and the struggle before you looms with a greater sense of doom than ever before. Is there anything left to fight for?
Aloneness is a hard battle itself to wage but, to wage this feeling in a broken, beat up body and with a sense of shattered self worth because of your sarcoidosis, the aloneness takes on an entirely new meaning. Your level of vulnerability is palpable now in a way it never was before. Something has shifted, like an earthquake in your soul, as you realize that this new sense of aloneness is not really new. It was simply masked by your denial that it wasn’t really there and, by your misunderstanding that the support you do receive from the ones closest to you meant that they understood more than they actually do.
Once you have this moment, you have to figure out what you are going to do about it. How are you going to manage this new understanding of isolation and alienation? This is a question that cannot be answered easily but, in order to continue living your life, you must find a way to accept it. It begins with making peace with lowering your expectations of other people, especially those you held to such a high standard of understanding. In reality they walk beside you but since they can never be within you, they can never fully appreciate your physical pain, your emotional angst or the mental hurdles you jump just to make life seem somewhat normal.
Though the support of those closest to you will always mean a great deal and though this support is much needed to help ease the burdens you face, you must never again allow yourself to be fooled that this support is equivalent to understanding. What your loved ones feel is not empathy. It is not the ability to share your experience or to walk in your shoes. What your loved ones feel for you is sympathy. It is feeling of sorrow or pity for your situation. While easily confused because these are similar concepts, they are not the same.
In that moment when you are forced to face that pit in your stomach, when all denial is stripped and, the reality that this journey is fully solitary hits you, it is a devastating experience but, it is a required experience in dealing with and managing a life with sarcoidosis. No one will ever truly understanding the level of unease you are now obligated to live with, the quiet anxiety over the slightest change in your routine and how your body will manage it, the invisible and constant foreboding regarding what level of pain you are in, the nagging nearly undetectable worry over how you will best find the energy to manage a relentless feeling of fatigue and the mind numbing brain fog that makes daily decision making a never ending challenge.
You are now aware that you are on your own in the fight of your life.