Since 2020, I have run the North West Support Group for the TNA UK and sometimes I pop up in the other areas as well. I currently run my regional support groups over zoom, due to the pandemic, but soon I will be able to run some in person too, which I am incredibly excited for!

Here are four things I’ve learned since starting running my support groups..

It’s all about the members.

Running a support group wasn’t something I thought I was qualified for, but I’ve learned that it’s not about me. I am the organiser and I moderate the conversation, but my amazing members are the heart and soul of my support group. I send out the invite, arrange the time and date, I start the conversation and then the group help each other. I am not a medical professional and I have only had TN since I was 23. I don’t have all the answers, but my members have all different experiences of living with trigeminal neuralgia and we can share that together. When someone asks a question about medication, someone else in my group might have tried a particular type and knows something about the side effects. Someone else may have visited a particular hospital or met with a specific surgeon. Someone may have a great technique for coping with pain that I’ve never considered before. I just facilitate the meeting and my amazing group look after each other.

People do come together in the worst of times.

If someone is having a bad pain day or is struggling with something, the group really do band together to help. I’ve never heard someone say they’re too in pain to help, but I’ve heard people say, ‘I understand that pain, let me help’.

Some people like to quietly observe (and that is okay!)

If you want to attend a support group, but you’d like to sit quietly and observe, I’m happy for you to enjoy just listening. I will always give everyone the opportunity to speak if they wish, but I won’t force anyone to join in for more than they are comfortable. Speaking can be painful for someone in a TN flare. You might also find it stressful to talk to a group of strangers and sometimes it is quite traumatic to discuss your pain – even though my members are incredibly welcoming. Everyone is welcome in my meetings no matter how much they would like to participate.

Running a support group is the best therapy I’ve ever had.

I come away from every single meeting with a smile, no matter how awful I feel before the meeting. I look forward to chatting with my group, I genuinely care how everyone is feeling and they care for me too. When people thank me, I thank them back, because I get so much more from these meetings than any of the members could realise. I used to feel so alone and now I have this incredible group of people who understand exactly how I feel. That is absolutely priceless and I am so lucky to have them.

If you are interested in becoming a member of the TNA UK and joining one of our regional support groups, please click here to sign up today.

If you are interested in running a local support group for the TNA UK, or volunteering with us in any way, please let me know and I will put you in touch with the relevant person to arrange this.

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Trigeminal Neuralgia