Living with an invisible illness changes people. It sculpts us into someone who hurts more often, appreciates more quickly, cries more easily, and live more passionately. Nearly four years ago, I was diagnosed with scleroderma. To many, scleroderma is a mystery. It is a progressive, debilitating disease, with no cure, an unknown cause, and imposes physical, emotional, and mental consequences on oneself.
On the outside, I do my best to appear normal, like nothing is wrong. Makeup applied and hair groomed, a pleasant smile, and some decent conversation every once in awhile. What you don’t see, are my braces and scars, my limitations and the struggles of opening jars, exhaustion and my tears because I’m overwhelmed with pain. My body is at constant battle with itself, not only physically, but mentally. Mentally, I worry about the disease and its progression, potential fibrosis and crippling, my upcoming appointments, and how everyone views me because sometimes I think it is all they see, as if “I have scleroderma” is written across my forehead. After all, the mind is one powerful force; it can either enslave or empower us. Everyday I miss myself and grieve the person I once was and the things I was able to do. But, how do you feel is a question I often get asked. If you must know, I feel like I constantly let people down. I feel guilty because I see the way my friends and family look and care for me in ways that they should not have to. I feel like a burden. I feel empty, lazy, and weak. I feel suffocated by my own thoughts and I feel like I am slowly falling apart. That’s how I feel and I often keep quiet because it’s easier. It hurts knowing people can hear me, but can never truly understand how I feel.
With that being said, living with an invisible illness has taught me so much. I may not be able to accomplish the many goals I once dreamed of, but I have learned to put things in perspective and set smaller more attainable goals that can be fulfilled in the near future. It has taught me self-care, acceptance, to remain positive, live life fully, and to never take things for granted. It has showed me that I am a lot stronger than I think, by mustering everything I got and push amidst the pain. It has taught me to be resilient, proactive, and confident. But most importantly, I have been taught to laugh and smile, to be brave and optimistic, even at my worst.
Like in my previous post, there are three things certain in life: death, taxes, and setbacks. Living with an invisible illness is just one of the many setbacks I and many of you will face throughout the years. What you need to remember is that you didn’t cause it. You can’t cure it, avoid it, outsmart it, nor control it. What you can do, is manage it and live with your new normal because staying true to yourself is the real battle. You are not your illness. It in no way defines who you are as an individual, but the people you surround yourself with and your actions do.