One of our CreakyJoints members wrote to me this week to let me know that she disagreed with a column I wrote.
I thought that was great news.
It’s not that I like the feeling that something I wrote doesn’t work for somebody, but I love the feeling that someone has enough spark to push back and state what is true for her.
That’s exactly the spirit we want to cultivate in our CreakyJoints community.
It can be very hard to do. Living with pain and chronic physical issues drain your energy. It often seems easier to just go along, and do what everyone else tells you is good for you. Or just go along, feeling alone, with the sense that nobody gets what is like to live in your body, with your story.
To cultivate your personal inner compass, and to speak your mind can take effort that you may not feel you have.
But when you do speak out – to a columnist, or a doctor, or a family member or friend about what is true for you, you connect with the strength and power that is yours alone.
You don’t have to go along and try to agree with things that aren’t right for you – whether it is a medication, or a prescription for how to live your life. You don’t have to care for yourself or manage your illness like everyone else does.
It is important to say no – to say – that doesn’t work for me, and to listen to what really does.
You are not a composite person, or a composite patient. Your life, your body and your illness are unique and deserve specific description and attention.
Here at CreakyJoints we offer a number of perspectives on living with RA and other forms of autoimmune illness. We hope that these perspectives offer you something, but we know that sometimes they may not fit your story at all.
We value each story, and each way that you find – not just to cope (though some days, coping is a huge victory), but to thrive – as this community does in many many ways.
We celebrate your stories, and also want to stand with you when it all feels like too much and celebrating is out of reach.
In order for that to happen, your work is to keep being true to what is real for you, what works for you, and let us know what is most helpful.
Keep speaking out – to us, to legislators, to your pharmacist and physician, and in your circles of community. It makes you stronger – and that strengthens all of us.
Thank you for reading and for commenting, and for living your lives with such grace and passion.