Amanda's story: Find your folk

Amanda talks about being neurodiverse, having a diagnosis of Emotionally Unstable Personality Disorder (EUPD) and the stigma that she experienced. "Finding your folk" and "people like me" went a long way in helping her to cope with her many challenges.

My name’s Amanda and I live with my daughter and parents in the Midlands. I work in retail but I’m due to start a new role with the NHS soon. Stigma associated with a personality disorder has exacerbated my experience of loneliness and my mental health suffered but I have found ways to connect.

From my early teens, I knew I was different. I grew up in a small town in the West Midlands. I didn’t understand people and they didn’t understand me. Being neurodiverse, I found it really difficult to fit in. I felt as though I sat on the fringes of many things. It left me feeling hopeless and empty.

My teenage years were the most difficult. I couldn’t understand it and my family couldn’t either. It was a very lonely place.

I’m now in my mid-forties and five years ago I was diagnosed with Emotionally Unstable Personality Disorder (EUPD). Living with a borderline personality disorder means you can struggle with relationships and emotions and how you cope with life and connect with other people.

Photo of Amanda

Stigma made it worse

I was told that getting the diagnosis would bring a sense of relief, but it didn’t. I took it really badly. EUPD affects thoughts, feelings and emotions, so it felt like I never had control over these things. The media’s portrayal of personality disorders doesn’t help. We get a bad rap, and the stigma adds insult to injury. I actually had someone at work, who I felt I could trust, say to me, “oh well, you haven’t killed anyone yet.

The loneliness I’ve experienced has been my big driver into peer support work. Being able to connect with people who’ve had similar experiences has been so helpful. I volunteer as peer support for a charity, and have just been offered peer support work in the NHS, I can’t wait. I feel like I’ve found my path and what works for me. When Covid hit and we had to stay at home, I actually felt more lonely. Having people around you doesn’t necessarily make you feel less lonely.

I live with my daughter and elderly parents who are vulnerable, so when I got Covid, I isolated myself within the house. I was locked in my room and it felt crippling. It was a lonely time for everyone. I was petrified of catching covid and passing it to my family. My dog, Ruby, is nearly eleven and she just gets me. She’s always there. She’s a constant in my life however I’m feeling. She doesn’t run off and hide when I’m crying or shouting or excited.

Find your people

Finding people who feel the same way meant a lot in terms of my own recovery. You have to find your tribe.

I have a passion for fitness and this is a way of finding connections with others.  The gym is a great place for me to start a conversation and find people who want to talk. I’ve met people at the gym who are surprisingly willing to share their mental health struggles. It helps to have a common thing in connection - something you’re comfortable with and helps you feel in control.

Instagram allowed me to share my experience with people too. A lot of people responded and said it resonated. Hearing those words “me too” meant a lot to me in terms of my own recovery. It’s like something you have in your pocket all the time that you have someone there, not physically there, that feels quite important a human connection that you have.

Listening to podcasts also helps - being able to hear a real voice when you experience loneliness helps me to feel connected. I don’t want to listen to music, which can be emotional. I think music makes you feel a certain way, and it can be quite triggering. For me, it doesn’t allow me to be mindful of how I’m really feeling. I wouldn’t read a book for similar reasons.

Peer support is unique as it’s a mutual relationship. I’m in a different place now with my recovery. Talking to people with similar experiences has definitely helped me.

Validate your feelings

We all crave human connection. For me, hearing a voice - particularly voices from people who’ve overcome struggles - really helps me to feel connected and less isolated.

Being able to connect with someone who can say “I get you, I understand” is so important. For me, I know I need to accept and understand my own condition. Not everyone understands, but you have to validate your own feelings.

And when other people say they are lonely, it’s important to acknowledge and validate how they feel. I understand that it can feel difficult or scary to reach out but I’d really encourage you to try. Finding my tribe and making connections has been game-changing and I want other people to find their tribe too.

Mental Health Awareness Week 2022

Mental Health Awareness Week 2022 took place from 9 to 15 May with the theme being Loneliness. Loneliness is affecting more and more of us in the UK and has had a huge impact on our physical and mental health during the pandemic. Reducing loneliness is a major step towards a mentally healthy society.

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If you or someone you know is struggling with their mental health, know that you're not alone. There are a number of organisations you can get help and support from. Visit our 'Get Help' page for more information on where to go to get mental health advice and support.

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