I never thought that my walking 4 miles a day, swimming and loving running with the wind in my face would come to a screeching halt. It did. About two years ago. What is worse is no one believes me. At times my movements and activities are totally limited but if I have a good day, you won’t know. Family and friends have no idea the excruciating pain surging through my spine at times. There are also the tricky spontaneous times my feet feel like they are encased in cement or the hot searing pain in my legs. I am always on high alert for a place to sit when this happens. I am diagnosed with chronic spinal stenosis involving years of epidurals, spinal decompression, a fusion that causes me to have more metal inserted into my back than Home Depot can deliver. Not the end of the world but difficult. 

The challenge of coping with my invisible illness are the questions, judgments and guilt that accompany my type of disability. I look perfectly fine to the outside world but the pressure of having to explain “it” is exhausting. What do they all want from me, crutches and an electronic wheelchair? I am very grateful for the movements I can maneuver. One of the most difficult consequences is the lack of understanding from others. Some just don’t believe me. I have to lower my expectations and have compassion, and I know that. Easier said than done. Those that say, “come on, you can do it,” if I’m doing water walking in a pool rather than swimming, becomes very unnerving for me. Some perceive me as lazy or not willing, when, in fact, I only wish I could do those laps from my past. My disability is a double-edged sword. Asking a cashier in a grocery store to pack my bags light often includes eye-rolling on their part and I feel obligated to explain I have a bad back. 

With an invisible disability, people don’t see me struggle when I’m sitting in a restaurant and cannot get up with the rest because my feet cannot move at that exact time. I take a deep breath, relax and soon the pain disappears, and I feel my feet coming to life again. At times, I doubt myself and think, “maybe I really can walk a mile” or “this is crazy, I don’t need to feel anxiety in public.” Oh, but I do, and my disability is my reality for the rest of my life. When people assume it is all in your head and don’t take you seriously, you do think you’ve lost your mind. It is so easy going down that black hole. If I become doubtful, then I forget my treatment plans for attending physical therapy. “You look so fine to me” is what I hear. I find myself apologizing knowing there is no way on earth they understand my life and how I manipulate it.

My coping strategies include letting go of expectations and focusing on what makes me happy. Creating my art brings me great joy and involves no judgments or how to cope with my pain. I cannot allow others’ lack of understanding to erode my self-confidence. I’ve done nothing to create my disability, it’s just one of those bad things that can happen to good people. I try to find support through friends, not sympathy, just them understanding my limitations. I am so grateful to those closest to me for giving me a hand at times. It is not the act of doing something, it is the fact they remember I’m a bit limited. The bottom line is I have a disability I don’t want and never believed it could happen to me. But it did and I must make the most of what is good in life. Things just take me a bit longer to do. Never underestimate what is going on inside people. What you see is not necessarily the whole package. I find shortcuts in my life, I put my hot glue gun in high throttle for my art and focus on the joy and gratefulness I feel in my heart.