A recurring theme we hear in our support group, is one of the devastating impact that life changing injuries from cauda equina syndrome have on personal and intimate relationships. Not only does cauda equina syndrome make social situations difficult, but it can destroy the fabric and support structure of the closest relationships for those affected by CES. We recently surveyed our support group members and asked them about the impact CES had on their personal relationships.
We had a huge response from over 640 members! Here’s what our members told us …
43% of our members told us that CES had significantly reduced their friendship circle, sharing comments such as “I’ve lost so very much. Marriage, friends and much more”.
19% believed CES had negatively affected their marriage or relationship with their partner, and a further 9% believed CES had destroyed those crucial, intimate relationships.
I saddened me to see that for 7% of our members, CES had wielded such impact on their life, that they believed it had even destroyed their ability to date, or find a new partner.
“Cauda Equina Syndrome ended our 20 year marriage, it has drastically caused my mental health issues, reduced my ability to socialise. I lost friends and family. But I met someone new, and we’ve been together for two years. Our sex life is pretty good, I wish it was better. My current partner is very supportive.”
On a positive note, 20% of our members felt that their relationships with friends and family had remained strong. It is heart-warming to know that for these members, family and friends continue to support them. I can’t help but wonder about the 80% that didn’t feel this way too.
For some people, family stay close but friendships are lost “My husband is the best, I truly appreciate and love him…you would never even know I once had friends, that’s the saddest part for me.”
As a charity we have been dedicated to building a strong, supportive community online. With over ten years supporting people virtually and face to face, we have learnt through trial and error the things that make sure our shared community is a safe and supportive place to be. We work hard to address the different problems that crop up, often many times over, and to promote positive experiences. We try hard to share progress being made across the NHS to reduce harm and improve pathways for patients.
Through support group meetings, online and face to face events, we try to reduce isolation experienced by members and create opportunities for new friendships and renewed confidence.
Online communities aren’t for everyone, but if you live with Cauda Equina Syndrome and would like to give it a whirl, you can join our group here Online Support Group – Cauda Equina Champions Charity
You can contact us for more information on the funded therapy services for people with cauda equina syndrome to navigate the inevitable changes to relationships post CES.
We look forward to ‘meeting’ you. Alternatively, you can join one of our monthly online support group meeting or contact us via our submission form for further help and advice www.championscharity.org.uk