Barry John Evans is an author and chronic pain sufferer. He also has Asperger syndrome. However, instead of isolating himself and giving up, he is sharing his struggles in the form of two books.
A New ME focuses primarily on his autoimmune condition, myalgic encephalomyelitis (ME), and the soon-to-be-released, Life Is Complicated: My Journey with Asperger Syndrome, explains the world through the eyes of a young man on the spectrum.
Barry hails from Southport, United Kingdom and, up until his condition caught up with him, he worked as a personal fitness trainer. He now primarily focuses on writing, inspiring others struggling with chronic illness, and healing one day at a time.
After watching one of Barry’s YouTube videos, I knew I had to get in contact with him for an interview.
1. What is your earliest childhood memory?
It’s hard to say because old photographs will trick my mind into thinking I remember things when I’m not sure if I actually do. Fond memories include, playing at parties, going on days out, etc., but I wouldn’t say there was a particular memory that sticks in my mind.
2. When did you first notice you felt different from others?
From as far back as I remember. I always felt like the one who was a bit behind everyone else and the one others mixed with only as a last resort. It always bothered me the fact I was very quiet outside of the house and couldn’t do anything about it.
3. What are some advantages to having Asperger syndrome?
For a start, it makes you feel different. Sometimes that’s an advantage but it can also be a disadvantage. It can often give you different viewpoints to others which can come across as interesting. Lastly, it can allow us to be very creative in what we do.
4. What are its drawbacks?
The sometimes ‘odd’ behaviour can result in bullying at school. It’s also very hard to understand what others are thinking and very hard taking in certain information, like in school lessons. You may come across as rude sometimes but not understand why. It can sometimes make you your own worst enemy.
5. Explain your chronic illness. Is ME different from CFS?
In short, yes. CFS is characterised by chronic fatigue whereas ME is characterised by many things. It’s a multi-system failure and although chronic fatigue is a very common symptom, it also includes intense muscle/joint pain, severe brain fog and immune problems amongst many others.
It’s a very difficult illness to explain and still to this day there is a lot of controversy surrounding it. A lot of doctors can be very unsympathetic whereas some are great.
6. How does ME affect your everyday life?
It’s changed my life. I was previously studying full-time at university, worked long shifts in a bar, worked out at the gym most days and met up with friends at the weekend as well as going to church on a Sunday. Now, I can’t work and haven’t been able to for over two years.
Most days I wake up in a lot of pain mainly coming from the legs and surviving is the main aim. I’ve lost all of my close friends, I’m not often able to leave the house and I’m approaching the age of 24 feeling like I’m making very little progress. I’ve always been very motivated and ambitious, but my life feels like it’s been put on hold.
7. Do you use prescriptions to treat your condition?
I’ve been on antidepressants since I was 17, and although I’d overcome my depression a few years ago, I still remain on the tablets so as not to upset the balance. The doctor said it was no harm, so I still take them.
I’ve also very recently stopped taking pain relief tablets as I felt they were making the fatigue more intense. I’ve been debating whether or not to go back on pain relief tablets, but I can just about work through pain whereas I can’t work through fatigue.
8. What type of alternative therapies have you tried? What has worked best for you?
I’ve currently been having cognitive behavioural therapy/graded exercise therapy at a hospital an hour-long drive away as nowhere nearer offers the service. I’ve felt for the most part that my occupational therapist has been more of a psychologist. She told me I had a very good understanding of the illness and that there’s not really a lot she can do other than advise. The only thing I’ve gained from it is an extra ear that listens to me.
9. Talk about the books you’ve written. Where can we find them?
I wrote a book called, A New ME, which was published in June of 2014. I’d discovered that writing was a bit of escapism for me so after talking to a friend I thought, why not? This friend told me how to self-publish and I went ahead with it. The aim of the book is to raise awareness for ME and to also put a lid on my past.
The title signifies a new start, the content focuses on my history throughout my childhood, the goings on before and after my ME diagnosis and my hopes for the future. It’s available on Amazon and some have contacted me directly as I have a few copies here, too.
My second book, Life Is Complicated: My Journey with Asperger Syndrome, is also available on Amazon.com. It’s a much longer book and it focuses on my journey with Asperger syndrome. It’s quite humorous in parts and there’s a lot of typical autistic behaviour people on the spectrum can relate to. It’s been much harder to write than my first one as the content has been a lot deeper.
10. If you had to sum it up, what is your message to the world?
There’re lots of things I could say, but one thing that springs to mind is THINK before you act. I’ve often gone by my own instinct and been through a lot of hurt because of it. I’d also say be nice to others as you never know what they’re going through; if someone disappoints you then it doesn’t mean you have to act the same way.
In addition to writing, Barry studies theology, sings, plays the piano, and enjoys spending time with his adorable rodent friends. (Yes, rats are cute. They’re also highly intelligent and make great pets. I used to own mice and loved them.)
I appreciate Barry taking time to do this interview.