There’s a horrible itch between my shoulder blades. I sit at home on a seemingly normal evening when a persistent itch makes itself known. I contemplate relieving myself of the nuisance but the consequences stop my hand from moving. Is it worth it? I wonder. The itch gets worse and I think; I have to do it. Maybe if I’m gentle it won’t be so bad. My hand bends to the back and I carefully-almost like a tickle-try and ease that persistent scratch. One finger makes contact with my bare skin and then the consequences come barrelling through. The pain explodes almost instantly. It’s a burning sensation that is the equivalent of needles stabbing my tender flesh.
I knew I should have ignored the scratch.
My little cousin enters the room and excitedly runs towards me, wrapping his tiny arms around my arms and squeezing tight. The already tender – and still burning skin- gets worse as it travels towards my arms. I grimace but slowly return the hug because at his age of three, he is unaware of my suffering. He finally pulls away from the hug and sits beside me. Soon after, we both prepare to eat dinner. My father has prepared his famous macaroni special- a meal everyone loves. My cousin enjoys the food but I look at it with contemplation. It looks delicious- the cheesy macaroni dished with banana slices and bacon bits. My mouth waters to taste my childhood favourite but again, the consequences have me pausing.
Are a few minutes of nostalgic deliciousness worth the hours of pain I will face later? I go with yes but eventually, I regret my decision. When the extended family has all left our home and I’m lying in bed, I’m faced with the reality of my life. My stomach is bloated again, rising to the size of a four-months pregnant woman. The flesh is tender to the touch; so much that simply walking sends shocks of pain erupting through me. Every so often sharp pains shoot in my stomach, my colon twists and spasms and the literal flesh of my stomach dents in as though an alien inside of me is pulling on puppet strings. I curl into a ball and pray the pain subsides. It usually does, hours, maybe days later.
I’m only twenty-two but this has been my hidden reality for years. As the millennials of my generation would say- being autoimmune blows.
I was twelve when I was first diagnosed as autoimmune. I was told that my immune system was weak and confused (in laymen’s terms) and that it was attacking itself. Autoimmune as I like to believe could be considered as hidden treason- my white blood cells going against its group of soldiers. What this meant for me though was a lifelong struggle, one without hope of a cure on the horizon.
In short, even at twelve, I was aware that I would constantly suffer with sensitive skin on my arms and back. As someone who was diagnosed as being insulin intolerant, I knew it meant I could never eat a watermelon without increasing my sugar levels to an unhealthy rate and suffering for days with constant nausea, dizzy spells, shaking hands and intense headaches. As someone who was diagnosed with ulcerative colitis at sixteen, I knew it meant that I would forever spend my life on a limited eating plan, one that eliminated the best fruits and vegetables and; on that odd occasion I ate what I shouldn’t, I knew I would face intense cramps in my colon and the possibility of losing my colon for good.
I suffer daily with restrictions that are hidden but as time has passed, I’ve come to live with a lifelong illness. I don’t relish in the pity of others and rather put my efforts into striving to live a normal life. I know my limits and I’ve learned to not have them stop me. I attend university and social gatherings and; though it often means bringing my own food or not eating, I still enjoy life out as a normal young girl in her twenties. I’ve come to learn that with an illness of mine there are simply two ways to deal with it- accept the hurdles in your life and make the most of it or, use it as a crutch or an excuse. I’ve chosen not to wallow in my misfortunes and for the most part, life has treated me well. My attendances in classes aren’t where they should be due to me falling more ill than others but, I push on and aim for that certificate that says I have a degree.
Most don’t know about what I face and as I write this and I am aware that it most likely isn’t a healthy approach to my illness. Many of my family and friends don’t know my health history or what I face every day and, I know it would make life easier if they did but, how do you truly explain what you feel daily? Maybe by writing it all out others may become slightly more aware and considerate of what others may be facing that aren’t as obvious as all other illnesses. Or maybe, by simply writing this, I’ve allowed myself the chance to express- albeit it only a little- of what I feel and suffer with and maybe, just that little bit of courage at sharing a piece of myself is what truly becomes something that helps me in the long run.
