This is what they had to say:
“I think this is a great reminder and leads into other great lines, like “we are not defined by our condition”.
It is one mighty tough, often lonely, often autonomous battle we fight, having these conditions. And sometimes we can be surrounded by people who love us; and yet still feel so lonely on the battlefield. I think this loneliness in the face of adversity, is often what makes us feel like it can scar or taint us, or leave a bitter taste in our mouth… and can change us. Every human on this planet is ever-changing… but I think the key words in this quote are: don’t let it change you into a person you are NOT. So I feel it’s still saying change is ok, and our stories, our journey, our wounds will change us – let them! It’s validating, it’s owning what our lives can be like juggling a chronic CTD. But don’t let us change into a version of ourselves that we don’t want to be….
Let’s share more, not only what went wrong, but how we got through it. Inspire each other and help to remind each other – not everything is fixable – but everything is manageable.” – Renee
“Anger is a big one… I have, at times in the past, been very angry about the “lot” that I have been dealt. It turned me into someone I didn’t like. I would snap at people, lash out, sometimes, without consciously realising it at the time (though I am aware of it now), in a way that would hurt the other person so that I would feel less “alone” in my own pain. I would also push people away, which did nothing to help me. Looking back, it was not a nice time for me or those around me either. I never want to be that person again. Yes, I still get angry, but these days I address it when it happens. I process it, I let myself feel it, and then I release it and move forward. I don’t let it consume me and take my potential for happiness and living away from me.” – Michelle T
“The pain makes me so grouchy and irritable and sometimes pretty negative. I always prided myself in my pleasant, patient, positive personality. But it’s hard to find that sometimes. I have to remind myself to find her again!! I just can’t let her win… That’s not who I am, I deserve better!” – Michele P
“We all have wounds. Things happen to us in life that leaves a mark on us; that wound us. Having a connective tissue disorder, chronic pain, and a myriad of other symptoms makes a mark, and those marks, those wounds, make us human. My wounds, make me, me.
You cannot separate me from my connective tissue disorder, yet at the same time, I am not defined by it. I refuse to let my conditions define me, because if I let that happen, then I would become someone that I am not. I am still a person, who happens to have a connective tissue disorder. But I also happen to love drawing, graphic design, reading, learning new things. I’m also a daughter, a sister, an aunty, a friend.
I haven’t always seen things this way; I haven’t always been able to see the delineation between my “self” and my condition, but it’s always been there. My condition has never been 100% of who I am, and I will never let that be the case. If I let it become 100% of who I am, if I let it define me and my interactions with everyone and everything in this world, then I am no longer me. I would no longer be a fiercely independent young woman, who is learning to live with a condition that she would never have chosen, but one that chose her. We are learning to be friends, not enemies….We are working together to be “me”.” – Michelle O
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