Here’s Evelyne’s story about her invisible illness through Q&A. BIG thank you to her for being brave and sharing her incredibly personal journey.
What is the name of your condition?
Emotionally unstable personality disorder (EUPD), depression, generalised anxiety disorder.
How long have you had it for?
I’ve been struggling with depression and bulimia since I was around thirteen – but it wasn’t until I was twenty years of age that I was finally diagnosed with EUPD and generalised anxiety disorder, at the Priory in Roehampton. It turns out that these difficulties stem from an abusive childhood.
What are your daily struggles and how has it affected you?
It’s hard to really describe how these insidious illness can affect your life. I often describe it as having this little knobbly demon who crawls around after me, waits for me in the shadows… Every now and again, a bigger one stands down the corridor from my bedroom, waiting for me. To do what, I don’t know. I’m an incredibly passionate, creative and positive person – so for me to just wake up one morning and have lost all of my light, and my love for love, for life… it’s heart breaking. It feels like I’m fighting a battle for my life – against myself. Like I feel like someone has been drowning me, and when I get to look up – it’s me. Doing it to myself. It’s terrifying. The loss of control over your life… The immense grief of losing who you are to this darkness. I can’t find the words, really.
I now channel all of the loss and hurt into music, into writing, and creating beautiful characters in screenplays who are both strong and weak, flawed and flawless, and that really helps. The music I write is moody, and sometimes a bit heavy – with an edge of pop or soul, which is nice. I don’t have to go too dark and fall off the edge!
In general, though, the work I have to put in every day to training my mind back to where it used to be before it got damaged by the abuse is the hardest (and, yes, most rewarding) part. It’s a daily struggle, and sometimes you win some, sometimes you lose some. You’ve got to find your balance, and accept that you’re not always gonna get it right, or be okay. That acceptance part is really hard. But it’s so worth it, I promise.
How have you dealt with it?
I would say that I am dealing with it, but I’m not entirely sure if this is a condition that can ever truly be ‘dealt with’. Whether it’s purely a chemical imbalance, or because another human damaged your identity through abusive behaviour, it doesn’t matter – you still lose pieces of yourself, and that’s a huge loss for any human.
Is there treatment for this condition?
Some say yes, some say no. It’s becoming more and more apparent that drugs really only help to a certain extent – you have to be willing to put in the hard work to get your mind, body and soul on track, too. For me this means eating well, getting lots of fresh air and exercise, practicing mindfulness and finding things to be grateful for every day. I also have a therapist, who I’ve seen for a number of years – she’s amazing. She knows me, and she often has to remind me that I forget how strong I am. It’s nice to have someone who can do that sometimes.
Did you ever find it hard to speak about and why?
Absolutely. Not only is there huge stigma and taboo attached to these illnesses, but there’s also a huge gap in understanding. We’re all getting better at accepting that mental health is a big issue today, but usually it’s actually accepting it OURSELVES that is the biggest hassle.
Has your condition led to other illness’s?
Unfortunately, yes. The anxiety causes serious shoulder and neck spasms and pains, so then pain meds and physio come into play. The depression can mean staying indoors too much and eating badly to comfort yourself – so fluctuating weight, and struggling with your body image. There’s a huge knock on effect – I wouldn’t wish it on anyone.
Do you know anyone who has the same condition and if not has that been hard to know that no one that you know has it?
I think most of us are on some sort of spectrum – and, certainly, we’ve all known dark, desperate times, no matter our colour, creed or socio-economic circumstances. So, yes, I’ve met many, many people with the same condition as me – and I’ve also met so many young women who have been very badly abused by someone close to them. It doesn’t make it any easier – the entire journey is incredibly personal, you know?
What would your advice be to anyone who is dealing with an invisible illness?
Write down what’s going to make you feel happy, and go make that thing happen. Talk about it. Be honest and open. Find healthy, positive ways to express yourself – try to train yourself out of the less constructive ways of coping. Don’t ever, ever feel ashamed of who you are and what you’re dealing with – wear it like a badge of honour, use it as your armour. You’re one of the toughest goddamned humans you’ll ever meet, and you don’t even know it get. Shine, because you only get one life. And never, ever give up.
What would your advice be to people who are trying to help someone with an invisible illness?
Be patient. We’re gonna have to figure some things out for ourselves, but show us love and support. Small acts of kindness and love can make more of a difference than you can imagine.
Written by Evelyne
Wow! I can honestly say i got very emotional reading that, and it made me feel very mixed emotions…flashbacks even.
Reading someone else’s story is so powerful, and I’m so grateful of the people who are sharing their stories with me, because it makes me (and others who are suffering with an invisible illness) feel more ‘normal’ and accepted in a way.
‘1 in 4 people experience a mental problems each year.’ (mind.org.uk)
‘More than 725,000 people in the UK are affected by an eating disorder.’
’45% of women have experienced some form of domestic violence, sexual assault, or stalking,At least 80,000 women suffer rape every year. … On average , two women a week in England and Wales are killed by a violent partner or ex-partner. This constitutes nearly 40% of all female homicide victims.’
(White ribbon Scotland)
‘Over 90% of chid abused children were abused by someone they knew’ (NSPPC.org.uk)
OCD,PTSD (Post traumatic stress disorder), Eating disorders, Phobias, Panic disorder, mixed anxiety and depression are all invisible illness’s that too many people hide. Too many people suffer in silence for whatever reason that might be, but that shouldn’t be the case, and no one should feel alone. or feel ashamed, isolated or excluded because they have an invisible illness that they can’t control.
A lot of invisible illness’s are related to traumatic events during childhood. I would definitely recommend counselling and CBT, as this type of therapy links with why you behave the way you do, linking disorders to past experience and analysing the root of the problem, which is a very scary and confusing process but it all adds up and makes sense in the end.
People like myself, and Evelyne have interpreted trauma into our creative world…music. BUT i know that not everyone is a musician, not every one is a writer, or an artist, and even if they are, then not everyone can take something bad and turn it into something good. And this why it’s so important to raise awareness, because instead of people thinking that their illness is their worst nightmare, I want people to defeat that demon in their head, to share their story’s, to be in control, and to be inspired by themselves that they are having to deal with this terrifying illness every single day.
Praise yourself for the horrible things you’ve been through, because thats made you who you are today, a strong minded, brave person who knows what danger is from a mile away. From past experiences you’ve been knocked down and you’ve learnt a lot along the way. You’ve come this far and you’ve been through the worst, and the only way you can go from here is upwards and onwards.
Here is a confidential helpline if you’re struggling with an invisible illness.
CLICK HERE for samaritans contact details for help. (can be emailed or rung)
Please don’t suffer in silence, and learn to slowly talk about it or write it down as Evelyne mentioned, as these are steps to healing.
You may not be able to change your invisible illness but you can change the way you think about them for sure, and I know this through personal experience. And rememberer to show all your love and support to people who are suffering, be patient with them and just treat people how you would like to be treated!
Thank you for reading, and if you are feeling ready to share your story, please don’t hesitate to message me, I’m always here!