USA – Jill Katherine

Jill Katherine – Peer Support Champion – USA


Hi everyone, I am Jill Katherine and I am thrilled to have been asked to be the US Peer Support Champion for Cauda Equina. I live in the Far North Suburbs of Chicago, Illinois.

I never dreamed my life would involve worrying about poop so much, but here I am, killing it! I have a very extroverted and humorous personality and I believe these attributes have helped me to conquer living with CES. For example, when I am in public with a friend and have an “accident” my reaction is hysterical laughter. As you can see, every topic is open game here. There will be no judgements and nothing about our condition is off limits or “too embarrassing”. My job isn’t to tell anyone how to handle living with CES, it’s to share experiences and be a friend. Those of us in the U.S. know how rare our diagnosis is, and finding others who are dealing with the same battles is priceless.

I’ve been living in diapers for 18 months now, and it’s been a wild ride: surgery, diagnosis, catheters, Peristeen, Pelvic Floor Therapy, successfully obtaining American SSDI, and not to brag, but I self advocated to a big insurance company for coverage on “non essential 🙄” medical equipment and won coverage!

I’m married almost 17 years, and am raising 2 smart, sensitive, feral, and hilarious boys and 2 sweet and therapeutic doggies. One thing that has helped me find meaningful purpose to my days since becoming unable to work is “creating”, especially textile arts. I spend a lot of time modern quilting and sewing bags and other handmade items. I have the best family, the best friends, and I believe in being 100% honest with everyone on how I struggle physically and mentally now, so they know how to help and support me.

I am so excited to learn about everyone’s journey with CES. If I can’t help someone myself, I will find the right resources. Thanks for taking the time to learn a bit about me! I adore laughing and smiling, and I believe they are both contagious, so please feel free to share photos, memes, and anything of the like to spread some cheer to everyone’s days.

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