Of Mice & Men frontman Austin Carlile has spoken out about his battle with a rare disease, telling fans that he ‘won’t get better’.
The band were forced to cut short their European tour so that Carlile could fly home for treatment for Marfan Syndrome – a rare fibrostic connective tissue disorder that painfully causes his body to seize up.
Now in a series of Tweets to his followers, Carlile has opened up about the harsh truths of the disease – revealing the true pain he faces every day, and the dark days ahead.
“FYI you don’t “get better” w/ Marfans,” he said. “You GET BY. I’ve had foot, ear, rib, head, hip, back, & heart surgeries just so I can function/live. All of you saying I should hurry up & get better what’s taking so long. I’ll never be better. you happy? I live EACH DAY as it comes. Each day is a battle. Marfan Syndrome is a fibrostic connective tissue disorder, that means it affects your ENTIRE BODY, and IT. IS. PAINFUL.”
He continued: “I don’t cry on Twitter on all the bad days. I suck it up & keep pushing on. The rare good days?!… I CHERISH those more than you could ever understand. & I wouldn’t wish it upon anyone. This is why I have such a heart for those hurting, mentally OR physically, because I. AM. TOO.”
FYI you don't "get better" w/ Marfans. You GET BY. I've had foot, ear, rib, head, hip, back, & heart surgeries just so I can function/live.
— Austin Carlile (@austincarlile) November 29, 2016
all of you saying I should hurry up & get better what's taking so long. I'll never be better. you happy? I live EACH DAY as it comes. each
— Austin Carlile (@austincarlile) November 29, 2016
day is a battle. Marfan Syndrome is a fibrostic connective tissue disorder, that means it affects your ENTIRE BODY, and IT. IS. PAINFUL.
— Austin Carlile (@austincarlile) November 29, 2016
I don't cry on Twitter on all the bad days. I suck it up & keep pushing on. The rare good days?!… I CHERISH those more than you could ever
— Austin Carlile (@austincarlile) November 29, 2016
understand. & I wouldn't wish it upon anyone. This is why I have such a heart for those hurting, mentally OR physically, because I. AM. TOO.
— Austin Carlile (@austincarlile) November 29, 2016
Speaking of his battles with the disease last month, Carlile said: “As most of you know I battle daily with a rare fibrostic connective tissue disorder called Marfan syndrome. Due to recent issues arising from this, we have cancelled the remainder of our European tour. It breaks my heart but the band & myself have decided it was unsafe for me to continue on in this state of health. I’m being admitted to Stanford University hospital where my specialists have been informed & are prepared to figure out what exactly is wrong. I will remain there as long as needed to run tests & come up with an assessment of what exactly is causing my body & heart to seize up.”
He continued: “My deepest apologies for those who were on tour with us & also those coming to our shows. I would never cancel unless a limb was falling off or it was endangering my life. Unfortunately it has become the later. Thank you to those who understand & support this decision, I promise to keep pushing & treat this as another hill to climb. My dad has flown from Costa Rica, & my team at Stanford are like family to me, so know that I am not alone. I also know I have all of you, & times like this reassure & warm my heart to know you stand with me as well. Please do not worry for me, there are multiple things more important happening in the world right now.
“Besides, God has a plan, all of this is in His hands at the end of the day and I’m ready for whatever comes next.”