Comment Etiquette

Keyboard

The purpose of our Support Group is for each member to find just that, support. Not just from us as the
CESA but most importantly from you guys, other people on the group who have either experienced
Cauda Equina Syndrome first hand or have experience as a carer or friend of someone with CES. It’s
really important when commenting on someone else’s post that we are mindful of the person’s feelings.
We never know another person’s pain (both physical and emotional) so someone with seemingly lesser
symptoms than yourself may actually be struggling to cope even more than you.

When someone reaches out in a post sometimes all they are looking for is a virtual hand to hold to get
over those moments when it feels impossible to cope alone. This can be especially hard when those
around you don’t fully understand what you’re going through. This is why we encourage carers and
friends to be a part of the group to learn as much as they can about our condition. We are lucky that we
have the internet so that we are never truly alone. We have our community here to hold us up during those
times, and we all have those times, I promise.

It can be tempting to see a post that we identify with and write a list of our own CES medical issues, as a
way of connecting with the person. In many cases it can be helpful to hear another person’s medical
journey, especially when the information is given with advice and compassion. However, in those hard
times I’ve very often heard people say to me “there’s always someone worse off than you” and as much as
that is very true, it’s the last thing I need to hear at my lowest point. The person saying it is trying to
console me, but in actuality I feel guilty for having my own (valid) emotional and physical pain.
In our community it’s very similar when people comment on a post and list things that are seemingly
worse than the person seeking help. By doing that it can result in them withdrawing from the group and
no longer seeking help because they don’t feel worthy. Everyone’s pain is our concern. Cauda Equina is a
scary experience across the board, as we all know.

I think there is real strength in asking for help and speaking your truth on our pages and in our support
groups. We encourage you to be as open as you want to be and ask you to offer your help to others if you
think you have something to say that might positively impact them. As the CESA we are working to make
the lives of all those suffering better. We want to reach the wider community to promote awareness of
Cauda Equina. We want to limit the amount of people who present with CE from having lasting nerve
damage by instilling the need to decompress the nerves within the 24 hour window to the medical
community.

You can help us ! – We need your experiences to know which trusts need the most help with dealing with
CE cases. So please share the articles we post and ask your friends and relatives to follow us on social
media platforms. By doing so we will be that bit closer to our goal and you will have helped us get there.
Thank you!

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