Sunday, 30 September 2018

#MeetTina, #MeetTony

End TN has two new friends.

Meet Tina and Tony.

They are our ambassadors for Trigeminal Neuralgia Awareness Day, on 7th October. They want to help raise awareness of what it is like to live with TN.

With your help, Tina and Tony will trend on social media, which will ensure more people learn about TN.

Please help us introduce them to the world by sharing their posts across all social media. Include the hashtags #MeetTina and #MeetTony and #TrigeminalNeuralgia

Each Tina and Tony posts highlights a different aspect of the way TN impacts daily life.

Visit our Facebook page for a whole album of Meet Tina Tony posts.

Share, share, and share again! Getting Tina and Tony to trend will get Trigeminal Neuralgia to trend, which will help us all.

Thank you.

Wednesday, 4 October 2017

Trigeminal Neuralgia Awareness

Trigeminal Neuralgia Awareness Day is just around the corner. 

On the End TN awareness page, we have just finished a series titled "TN Experiences". Some of our members wrote a short piece about their experience of living with trigeminal neuralgia. The album can be found here.  This series shows more than ever, how much awareness is needed.

By sharing these stories, really explaining what life can be like, we hope that people might understand more.

Awareness Album

Also on the awareness page, we have an album specifically for awareness day.

There are pics with short explanations of TN and some which can be used as profile pics on social media sites.

Profile Frames

On Facebook, we have some frames which can be used. Click here then click 'Try it' or 'use this frame' and you will find several options.

And if you want a frame for another social media site, we have a frame over on Twibbon


We have various sizes, so some are perfect for banners and header pics. These can be downloaded and are free to be used.

A Little Bit of Light Relief

Awareness is all about showing the harsh realities of living with facial pain. But we don't want to be bogged down with depressing posts all the time.
If you fancy a wee bit of fun, have a go at our maths puzzle here.

Awareness every day...

Awareness should never be reserved for just one day or even one month of the year...we need it every day. Our posts, files, videos etc are always available to share.

Monday, 2 October 2017

Trigeminal Neuralgia Awareness

Awareness is so important. When we share posts for awareness, it's important to get the message across. This poster explains exactly what Trigeminal Neuralgia is. We have more posts like this on our awareness page. They can be found here. Please share what you can.

For a list of all our files, posters and videos, please take a look at our index

Thursday, 21 September 2017

Write for Awareness (Part 2)

The following poem is by Maria Pia Dell’Omo. She has written it in Italian and translated to English.

And now the original Italian version

Wednesday, 13 September 2017

Write for Awareness.

A few of our support group members have written some poems for awareness.

Tuesday, 29 September 2015

Making the Inivisible Visible

How many people do you know who have an invisible condition? If they don't tell you, how would you know? It's invisible.

So, could be many more than you realise.

Very many more.

We never know what goesver know what goes on behind a happy, smiling face.

People living with a physical or mental health problem which cannot be seen look fine. They look healthy. But in actual fact, they are living with something which may be quite horrendous. Something frightening. Something painful. Something which has a huge impact on their life. But....they look fine.

Their disability is already bad enough, without having to then deal with obstacles and prejudice.

The world needs to learn to see beyond disabilities. But it also needs to learn to see beyond the invisibility of some disabilities.

We never know what goes on behind closed doors. Likewise, we never know what goes on behind a happy, smiling face.

People with invisible disabilaties often get criticised when using disabled parking areas. "They shouldn't be using that space. Look at them. They look healthier than me!" But the truth is that they have been granted the disabled parking badge, because they have a disability. A doctor has signed off on it, and the person has paid for it. Looking fine doesn't mean being fine. They need that space close to where they are going for a reason. Do they need to have notes left on their cars saying they have no right to the space? Or strangers approaching them demanding they move their cars? No, but this is often the reality for the invisibly disabled. It is difficult enough dealing with the disability itself, without this added problem.

Another big issue is medication. Sometimes people are accused of being drug addicts. They are not. They do need to take regular medication to manage their condition. This is not a choice. Yet even pharmacists sometimes question the patient's prescription. 

Trigeminal Neuralgia and other facial pain conditions are just some of the many invisible conditions. People can be living with unbearable pain, but nothing can be seen. Not even by a doctor. 

We have created the following short video about Trigeminal Neuralgia, in the hope that it can possibly help bring some awareness about this extremely painful, but invisible, condition. 

Invisible illness week

This is invisible illness week (28th September - 4th October). End TN has joined with many other groups for other invisible conditions to try to get more awareness for the many conditions which cannot be seen.

We want to make the invisible visible.

We can make a difference, but we need your help.

Please share blog posts, videos and posters about invisible conditions, using the following hashtags when you post: #MyInvisibleFight #iiwk2015 #Invisibleillness along with the name of the condition which you or someone you know lives with.

Please help us make the invisible visible.

Friday, 26 June 2015

25 Things To Say To Someone With A Chronic Condition

We often see posts relating to what NOT to say to someone with a chronic condition. 

Here are a few suggestions of things which most people with a chronic condition would like to hear.

Obviously they won't cure the condition, but they can help the person.
  1. Is there anything I can do to help?
  2. I'm always here if you want to chat.
  3. Would you like me to take the kids this afternoon so you can rest?
  4. Do you feel up to a visit.....I'll bring dinner?
  5. Don't worry about housework. I'm here to see you.
  6. If you ever want some moral support for doctors visits, just ask and I will come along with you.
  7. We don't have to talk, I just want to keep you company.
  8. I’ve brought chocolate.
  9. I don't know exactly how you feel, but I can imagine it's horrible to deal with.
  10. Do you have any reading material about your condition, as I'd really like to learn a bit more so I can understand more.
  11. Is there anywhere you'd like to go...I can take you? I know you can't drive much these days.
  12. Remember that movie you wanted to see, but you weren't able to go to the cinema? I've got it on DVD. Would you like me to bring it round tonight?
  13. Write me a grocery list and I will go collect it for you.
  14. I know you’re on your own a lot....if you want some company, I can visit anytime.
  15. If you’re feeling down, I am a good listener.
  16. I remembered how much you loved my chocolate cake, so I made one for you this morning.
  17. When you have to cancel arrangements at the last minute, I'll understand.
  18. Would you like me to take your dog for some nice long walks? I know you're not up to doing that just now.
  19. What is it like for you, living with a chronic condition?
  20. Don't feel you need to pretend to me about how you are feeling. You're my if you want to vent about it, I'm here to listen.
  21. I can't pretend to understand how you are feeling, but I do have empathy.
  22. I'll not be offended if you say you can't talk, you need to rest or that you're not in the mood for company.
  23. Try not to get stressed about Christmas, birthdays and other special events....I can help you. Please just ask.
  24. Call me. Call me any time you need me.
  25. I’ve brought more chocolate...