…I torture myself with negative self-talk and limiting beliefs. But, part of the healing process involves being vulnerable so here goes…the first year after my diagnosis was the worst. I wasn’t on medication and I had hope that things would turn around quicker than they have (boy was I in for a rude awakening). Then there were the exhausting convos, trying to explain just what the hell scleroderma was and feeling as if this disease was my fault. For a while I was so pissed that I blamed my mother, she died from chronic illness, so I figured it was an omen of sorts. I gradually drifted away from my spiritual foundation and found myself at Bedside Baptist and The Church of Netflix every Sunday morning. I couldn’t understand why God allow this ish to happen. I mean DAMN! Hadn’t I already gone through enough shit? Now you curse me with this disease that I can’t get rid of; at best I can only hope for remission AND I must take medication which I came to despise while watching my mother lose her battle back in 2003. To add insult to injury, I have spent thousands on doctors, alternative treatments, and dietary changes desperate to not be this person
When I look in the mirror all I see is the scars of fibrosis, skin tightness, and a girl who used to at least be pretty, but now I don’t even have that. Scleroderma had broken me, and I stopped living. I know I should be grateful, but it became hard to even give thanks for seeing a new day. Simple tasks had become damn near impossible and the burden that I was once tasked with of being a caretaker to my ailing mother at such a young age was coming to haunt me. Being a single mom of a then 10-year-old son, I had to rely and ask him to do things for me that “normal” people should be able to do. I was embarrassed.
The funny thing about diseases like Scleroderma, is oftentimes the person doesn’t look sick. In fact, they appear to be happy and healthy, and are probably just going along to get along. I have learned how to fake the funk and fly under the radar, praying that I wouldn’t be found out or lying about my condition altogether and offering some other excuse as to why my hands turn blue and white in a conference room or I have a heater at my desk blowing full blast in the middle of summer (Raynaud’s is a real B-I-T…). No, I didn’t feel like explaining why I needed someone to pick up that piece of paper that I dropped on the floor. It became easier to just assimilate and suppress the stress of trying to navigate life with Scleroderma. I am coming upon my three-year anniversary since my diagnosis and am just now starting to acknowledge that my life is forever changed and for my sake I need to learn how to embrace this new season that I have been thrown into. It’s just so damn hard.
But what’s even harder is to keep fighting something that I have no control over and to stop living life. I shut myself off from a lot of people and opportunities because of the discomfort of being found out. I stopped dating because I didn’t want to feel the sting of rejection from being too much of a burden to someone. At one point I even considered stopping my medication and just letting things happen and hoping for the inevitable. Ecclesiastes 3:1 says that there is basically a purpose for every season. Before my diagnosis I set out to accomplish some large goals and have successfully achieved some of them, but any one that knows me will tell you that I am a control freak and quite inpatient. Since this diagnosis, I have had little to no control over anything, my body, my life, my career. I have been subject to sit in this place and space and just be. Faith has never been my strong suit and I have always given a skeptical side-eye to most people and situations, so to live in this moment is scary as hell. My hope is that I can stop being her and who she needs to be and just be Kymberly! Let me be honest, scleroderma may have taken away a lot of physical and tangible things, but I have ALWAYS struggled with low self-confidence, fear, and acceptance. I just always managed to fly under the radar but, spoiler alert, scleroderma was just the bitch that put me on blast. At any rate, I haven’t been honest with people, those closest to me, or myself and I am tired of living a lie. I have scleroderma and I haven’t dealt with it the best that I should, but I am willing to show up, so I can not only live my best life, but share just how dope of a chick I really am, despite this diagnosis!!!