Click to Print
Behçet's & Psoriatic Arthritis
I am living in a world that not even I understand. I open my eyes after a restless night, nausea gripping me, knowing full well that the slightest movement will send a wave of pain through my bones and muscles and that yet again, by the time night falls, I will have dealt with chronic pain in some part of my body.
I question myself: Can this be real? Maybe I am weak? Maybe it's in my head? By my body answers back with a yell that is crippling.
My doctors try this and that and fumble through a list of drugs, many of which knock the life out of you while trying to fix the problem. You find yourself giving up on passions for things you love to do, not because you want to, but because you just can't do those things anymore. You find new things to become passionate about and use those as a distraction, hoping and praying these too won't become too difficult.
You say goodbye to friendships that meant the world to you because you become too hard to be around. Lost is the person would give and give, and loved to do so. I understand that sickness drags a person down, and who wants to be around "Debbie Downer?" Those who stick by you, you are thankful for because they are true friends. But I feel a sense of guilt for having them, almost like they have been trapped in my spider's web that I can't get out of. So you start to go silent and become removed because of the guilt you feel.
You become the same with your family. You become angry with yourself because of your constant whining, but you also can't hid the pain you feel.
Trapped by an illness that wraps you in its web and squeezes the life out of you, physically and emotionally.
Every day can be different; not knowing what's next is frustrating, just hoping for a day that brings some peace to your body.
You feel judged by many, including doctors who don't have the expertise in the disorder. You are constantly evaluated on the many tests you undergo. Specialists are thrilled when you tick their boxes for rare disorders. You, on the other hand, feel like their guinea pig. In addition to the hoops you jump through to reach the goal of finding a medication that actually helps you.
People in general feel they will help by giving their opinion saying "it's the meds" "it's your diet" or "you need to start yoga." These things aren't helpful and only make us retreat, feeling judged and misunderstood regarding what our reality is.
I know that for many, we would stand on our heads an drink green juices through a straw if it meant peace for our bodies.
Today was a bad start, but I sit writing this in my outside room, where my waterfall flows and my brightly coloured flowers bring me joy. I will find the courage to fight back and the determination not to be broken. I will speak my pain to those who love me because I know they care and will pick me up when I fall, and fall I may.
Julia, Australia, Behçet's & Psoriatic Arthritis