I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
Carly Medosch, in response to “A field guide to The Diagnosis Difference”:
There is such a vast amount of information out there, and it can be so vitally helpful that you could call it essential. At the same time, a chronic illness has a depth that you won’t fully understand or know at the beginning of your journey. It may be helpful to read the stories of others, or it might be scary and cause you to ignore health information for a while. I know a fairly famous internet personality who refused to accept the “spoonie” label, because she thought that would mean accepting the control her diagnosis would have over her. Years later and she has a different understanding because of her experiences.
Be kind to yourself. Take information in big bites or small. You may not feel comfortable with something today that you may find old hat in a few years. Things change. Don’t settle for absolutes. Focus on the positives. Find your people; they are out there (especially online).
Note: The featured image is Carly’s jacket in the Walking Gallery, painted by Regina Holliday. Read more comments and quotes from my community colleagues.
Susannah thank you for sharing this insightful post by Carly. I missed Carly’s original post and it is very pertinent to the work we are doing.
Thanks Sunnie and Susannah! I’ve been a member of several different support groups over the past 20 years and this scenario comes up so often as people join at different points in their life with chronic illness. It’s advice I would do well to remember more often myself, too!
Yes, well put. I can totally relate to this. I have been on waves or rollercoasters this past year. At times needing ALL the information, while at other times not wanting to hear or read anything at all – trying to pretend to be ‘normal’ again. It’s a real experience, learning to live with a chronic condition. It really gets into your head. My online support community have been invaluable.
My rubric is to be useful so it means a lot to me when a post resonates — thanks, Carly, for the insight and thanks to Sunnie & Jessica for letting us know that you’re taking it in!
I find compassion for yourself is a tough one with Chronic illness in this society… especially when it’s invisible. Embracing and redefining oneself is the new journey …. and probably the journey all along. Chronic Illness simply magnifies the issues. Thank you for this.