When you live with a temperamental health condition, one that is wildly misunderstood and one for which there is not only no cure for but where the goal of treatment has no other purpose than to ease symptoms, it can be a drain. When you live with an erratic disease where even being in remission feels like you are still stuck in one of the rings of hell, it can be discouraging. When you live with an illness that is more changeable than weather, with symptoms flaring and raging and, ebbing and flowing and, that are all over the place, it can be devastating. When you live with a condition where you look fine on the outside but are falling apart on the inside and people judge you for what they don’t understand, it can be disheartening.
Sarcoidosis is not for wimps. Life with an chronic condition requires an inner stamina that in and of itself is exhausting but without it, one withers and stops living. One of the most important aspects of life with sarcoidosis, one of the things that helps feed that stamina is the ability to escape the disease. It’s always part of us but if we can mentally detach from it, if we can break our minds and hearts free from it even for a little while every day, then we can find the strength we need to keep up the fight against not having enough air to breath and the unyielding aches and pains we’ve to come to know all too well.
Escaping sarcoidosis can come in many forms. It can be the simple act of getting out of bed and not only getting dressed but trying to look your best. Yes, we do sometimes get judged for not looking sick but that judgement is not our problem. Judgements like that are a reflection of the person making them, they are not a fair commentary on our reality.
Trying to keep a sense of humor and fun in your life when you have a chronic health condition, is key. Humor keeps things in perspective and having fun helps us forget our troubles, whatever they might be. It’s important to stay connected to the world around us and not to allow this disease to consume us. Finding ways to escape the day to day stress and strains of a disease that are not only physically draining and emotionally taxing but for some are financially crushing, is the only way to stay sane.
Escaping this disease means staying engaged in interests and hobbies, connecting with friends and family, watching a movie or reading a book, going shopping, exercising or taking the dog for a walk. Escaping this disease is going to a museum, or learning a new recipe. It is reaching beyond ourselves to help others. For some it is going to work. Escaping sarcoidosis is any act of normalcy that allows us to forget we are sick and gives us a feeling of comfort. Escaping sarcoidosis helps us remember that we are not our disease, we are not defined by it and we do not have to let it dominate our entire world…all the time. However you choose to do it, escaping sarcoidosis is a must!