How Do You Cope With Illness When You're the 'World's Biggest Cynic?'
I am a pessimist. I am. At the age of 33 I have no delusions of who or what I am. We live in a cynical world and I am the world’s biggest cynic. So accepting the reality of being chronically ill at such a young age hasn’t been so easy for me to grapple with. To me it just feels like the world falling out from beneath my feet, yet again, in a long line of sorrows and pain. I will concede that I am a stronger person for all my trials and tribulations, but it gets old and they do start to wear on one’s soul. I’ve been sick my whole life. Like most chronically ill people, no doctor was ever able to tell me what was wrong with me. And in my younger years when doctors couldn’t come up with an answer, they would always turn to my parents and tell them to bring me to a shrink, that it was all psychosomatic. After being repeatedly told that you are “crazy”…you start believing that maybe you are “crazy.” I will say it is relieving now to finally have diagnoses after such a long road. I’ve been officially diagnosed with mast cell activation disorder and POTS (postural orthostatic tachycardia syndrome) and let me say, the two of them together is quite the ride.
The hardest part I think by far now is the not knowing… The not knowing what is going to come next… Not knowing when you go to sleep at night what new ailment will befall you in the morning. And finding the energy and resilience to be so strong some days, only to be knocked down again because you’re either too exhausted or too dizzy or in too much pain to even move. Being chronically and incurably sick is all still so new to me…it is still a fresh, raw, open wound.
Death, life, love, pain…happiness? We’re all looking for something – for the answer. It’s human nature. Humans are terrified to acknowledge that maybe there isn’t a reason for things, that maybe there isn’t a grand preordained plan. We’re simply here to make our way. It sucks. But it all comes down to acceptance. There’s nothing we can do about it. I can’t change the fact or make my incurable illnesses go away. So I have to somehow find within myself the ability to come to terms with what my life is now. Believe me when I say I still am in the mourning process – mourning my old life and mourning the life and the dreams that I know I can never have. That right there – out of all the terribly tragic and painful heartache I’ve had to overcome in my life thus far – that by far is the hardest. I’m tired of being tired all the time. I’m tired of feeling like the ultimate failure. I’m tired of feeling not “normal.” I’m tired of feeling so immensely guilty for being such a burden on my family for being sick.
I’ve always thought of myself as a fighter, a warrior. But to be honest, there have been numerous weak and desperate moments when I felt there was no more strength to go around anymore and I was just done. It was just too much. Being chronically ill is absolutely a constant roller coaster ride. There will be the ups and definitely the downs and we’re meant to pull the inner strength from within ourselves and plow through those times. I’m still here and I’m still plowing! Somehow (I don’t quite know how yet) I’m still fighting and persevering. And my immensely pessimistic self is truly trying my best to pull my own kind of hope out of all of this and to live the most enjoyable life possible with the hand I was dealt. I am a warrior.
“The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.”
– Robert Frost
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Thinkstock photo via lolostock.