Invisible Disability

The fact is, you feel like it's your fault as you tug your body into proper posture and wash down mild pain relievers with black tea. Surely, surely it is. It must be. I chose to take a long distance drive and hike up steep stone steps for the fall view of mountain valleys. It was my soul that yearned for and craved to see the waves of red and yellow overtaking the land. Eagerly, gladly, I woke up and sprung to action on having an adventure for the day.

Only, I barely hurt during the hike and on the drive home. I felt as normal as someone with constant pain can. Yet Monday at work, it felt impossible to stay. Sharp, burning pain tore through my back, my legs, my arm. My hands felt like needles were pricking them and my feet and legs kept going numb and weak. So, I went home. Went home and slept until dinner. It's much better to sleep through the pain.

Yet, I hate the heavy fog of medication and the waves of sleepiness that blur my memories later. It's like loosing time. Erasing a day of my life. It feels wasted. Try as a I might, I cannot shake the curse of a flare up of pain. Or perhaps it's the scheduled monthly pain of a cycle I cannot avoid. That too causes numbness and tears. That too is washed down with medication and sleep. Forever, I live in a dance of finding balance with rest and physical activities.

I would like to run again, mile after mile. But, it has been touch and go for many years now. Distances of six miles and beyond hover forever just beyond my next numb step. I cannot help that my body is different, yet somehow I feel responsible for my genetic ailments. They were dismissed as a kid by my parents, by my coaches, and then later by doctors. It's difficult not to dismiss them now. I often question why I cannot just overcome. But, it's easy to be skeptical of yourself during a duration of good days and low pain. It's easy to challenge my personal perception when my body is working almost correctly. When the daily pain is at a three or less.

However, one bad day will have me limping and and pinching, and I am reminded that I cannot just do as I please without paying the price later. I know the cost of freedom. I know the risk of pushing myself. There's a sense of guilt with it too. It's an invisible ailment. Only I know. Only I see until my leg refuses to work and I trip. It's hard to cope with looking and being weak only because of my body's refusal to be anything more. It's tedious and frustrating. I would like to lift heavy weights. I would like to do marathons. I would like to carry things with ease.

Those things can be done in doses, and with calculated risks later. I pay for them with time, with pain, and with tears. There's an unspoken currency I exchange with my body every time I wish to pursue physical activities. Much to my dismay, the exchange rate of pain to activity is never consistent enough for me to understand it. Perhaps a steep three mile hike with a pack felt great on Tuesday, then on Saturday a short two mile run on the treadmill made me limp the following day.

I am better than I used to be at managing the pain. You learn more coping skills and what triggers to avoid. You journal your pain and take notes on what accommodations you need. Although, there will always be the unpredictable surprises. Just as there will always be the self advocation and polite declines to others. They will look at you with curious eyes, ready to pry into your medical history and play doctor. On bad days those looks turn into sympathy. Into pity and words of apology. As if that helps you.

And because it's invisible to others until it impacts your steps or pinches your face into a frown, there will be silent judgments formed. I am and look relatively in shape, and that too will form bias that I will fail to meet the weight of at times. But I will try, oh how I will try again and again. You see, I am very active. Much more active than people expect me to be, especially if I disclose that it hurts. Yet, somehow, for myself, it's not active enough. Again, your own silly expectations echo in your head.

You feel as if it is your fault. If your pain tolerance was higher. If you could push through more. Build the muscles up. Stick to a strict routine. Or perhaps the opposite is the solution. If you favored yourself more and avoided the pain. If you did not chase adventures that bring forth torment. Just stayed inside and still. No hikes or mountains. Then you would not need to miss work. Then you would not have to sacrifice days to the blur of medication. You would not need as much accommodation and have to apologize for any inconveniences you caused. Surely then, you could pretend better at being as able bodied as you look.

Truthfully, there's not a wrong answer. And, you know that. I know that. There is only the tottering push and pull of finding balance between satisfaction with what I can manage and acceptance of what I cannot. I listen to my body on bad days. I avoid large triggers. I build up, test, and push my limits. If my mind yearns for adventure, I feed in the best way I can that day. I get used to advocating for myself. Give myself permission to be weak. To miss work. Perhaps that's what you need. What we all need. Permission to exist as our body will allow. Permission to be different than what we and others may expect. And you have my permission to let go of that voice in your head that tells you it's your fault. It's not. It's just how your body is. Like your eye color or the freckles on your arms. It just is.