What does it mean to be an advocate? An advocate is a voice. An advocate speaks publicly and on behalf of a particular cause. An advocate takes a position and passionately supports it. An advocate is a crusader, a fighter and a reformer. An advocate is a communicator for those who cannot speak for themselves. An advocate is a champion, a campaigner and an exponent. An advocate is protagonist, of sorts. An advocate acts out of a strong desire to promote truth, to share knowledge and, bring understanding to a cloudy and confused subject. An advocate is motivated by the need to shed light on ignorance’s darkness.
When you live inside a body that is possessed by the evils of chronic disease, a disease like sarcoidosis or, any other chronic, unpredictable and often completely misunderstood condition, you need advocates. You need champions in your life when you feel too physically drained and emotionally spent to speak for yourself. You need crusaders, fighters and lobbyists. Unfortunately, sometimes they just aren’t there. They aren’t there when you have a confusing, hidden, and often completely confounding disease like sarcoidosis. You don’t look sick so…you’re faking it. Your friends and family grow weary of your constant body numbing fatigue, shortness of breath, low grade fevers and endless body aches. They swiftly move on with life while you lag behind, desperate but, unable to keep up. They become so involved in their own lives, they rarely look back to see if you are even still there. It’s not that they don’t care. It’s just that your disease is inconvenient, your pace is not conducive to modern life!
Advocates aren’t there because they don’t understand your disease. They do a quick google search, read a few paragraphs of misinformation, because that is generally what is out there when you have a rare disease, and they don’t understand what the big deal is. Again, while well intentioned, these non-advocates, often your closest friends and family, just cannot be bothered to expend their valuable time on your seemingly endless number of needs. You’re sick. They aren’t. They just don’t understand that while physically you’ve changed, you are still you and that your needs are not needless. You have the same needs as anyone else. You have the need to be heard, to be accepted, to still be valued.
Rare disease is frustrating to live with because it shapes your quality of life. When you live with a rare and capricious disease, you find yourself constantly on guard. You actually look pretty good and this is misleading, as if that is your fault too. Doctors don’t often have a full understanding, if any at all, of your disease. They so infrequently deal with it that their insecurity regarding their lack of knowledge often comes off as arrogance. They become defensive and stop listening. They treat you as if your symptoms are all in your head. They aren’t. Diseases like sarcoidosis are not easy to diagnose, they are not well researched and, there is little funding to find a cause or a cure. Nothing about living with a disease like sarcoidosis or, any other rare condition, is easy. It’s a life changing, life defining experience that you did not ask for or expect would happen to you. Chronic illness is someone else’s problem.
So, you can’t count on advocates. You’re lucky if you have even one in your life but, even they have their limits. This is not their fault. They simply don’t know what they can’t know. You’re lucky if you have someone who sees what has happened to you, to your body, your mind and your life’s path and, while not fully understanding it, still walks beside you. But, because even they cannot grasp what life is like inside a broken body, there are still times you are fully on your own. Accepting this often all too solitary path, is something anyone living with a chronic, life altering, health issue must do in order to survive. Let’s face it, even when loved ones stick with you, chronic illness is lonely. It is incredibly lonely. Aloneness is your new normal. A part of you is now forever apart from the healthy and the well. The healthy and well do not make as much room for you in their lives. It’s too messy, too scary, too awkward, too bothersome. They feel like you should make more effort. They genuinely don’t understand that you are doing the very best that you can. The brutal truth is, it’s annoying to be around sick people and those who are chronically unwell are a drain.
Living now, in a new state of separation, you must learn to communicate for yourself, to find your own words, to speak up for yourself even if, and maybe especially when, it feels like no one else is listening. Since we all need advocates in life and you now know, that even if you’re lucky to have one or two, they have their limits, you must become your own self promoter. You must be well versed, highly educated and sincerely motivated to care for yourself enough to become your own spokesperson. Self advocacy is the key to living a successful life with a rare chronic health condition. You cannot afford to try to please other people by constantly trying to accommodate them out of a misplaced feeling of guilt that you are sick and somehow let them down. You didn’t. You can’t help what has happened to you. Your needs are still important.
Self advocacy is not easy in the beginning. There is something uncomfortable about being your own champion. It feels egotistical. It’s not. It’s self care. Having an in-depth understanding of the disease you are fighting, educating the ignorant, even doctors, is vital to feeling validated. Taking the time to share your needs, even if they are inopportune to others and, doing so without guilt is a skill that takes practice. You have to make yourself your own priority when you have a chronic health condition. You cannot expect others to put your needs first. You have already been, even if unintentionally, left behind. You have no reason to feel shame or guilt or discomfort for finding your own voice. No one else is going to do it for you. Be proud of yourself for learning to become your own best cheerleader because your life’s happiness depends on it.