A Co Tyrone man has opened up on his childhood scoliosis diagnosis and the effect that a life long condition can have on mental health.
John-Paul Grimes, 43 and originally from Donaghmore, has shared his experience of the condition to mark the start of Scoliosis Awareness Month this June.
Scoliosis is not a disease, it just means that in an often otherwise healthy person, the spine is curved or twisted.
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Although many people have not heard of scoliosis, it is not rare as three to four children per 1,000 need specialist supervision.
John-Paul's condition is Kyphoscoliosis, a severe and complex spinal curvature that can occur at any age but in some cases, it may even be present at birth due to congenital issues.
It is typically noticed due to the visible signs of a hunched or uneven back and if the curvature is excessive, it can also cause physical debilitations.
John-Paul, a writer and freelance journalist now based in Coleraine, has grown-up and lived with this condition for many years.
"Growing up in a rural close-knit village, being insulated, supported, and protected by a family-community perhaps helped me forget about my disability," he reflected.
"I was never treated differently. Like many things in life, this was both the best and worst of things for me."
Living with a spinal disability and life-long health issues has certainly left John-Paul resilient yet it has also impacted on mental health.
He says being a husband and a father has given him a focus to manage his health better.
"Previously, undoubtedly due to the emotional burden, I have struggled to have a precise purpose in my life. I had fewer reasons to carry on fighting for my health.
"For many years I battled with holding down jobs, completing college courses, improving my employment chances, focusing on a career. Unsurprisingly, I also struggled with relationships, possibly because I never really believed my own self-worth.
"In 2014 I married the most supportive and loving person I could have ever met. My wife Francine has shown me the love and care that I needed in a relationship. I have, obviously, never felt judged but only supported and inspired by my wife.
"We had our beautiful daughter Mara in 2015, the most caring, loving, and sweetest little girl we could have ever imagined. Mara is very (and annoyingly) protective of her daddy, scolding me if I don’t eat well or if I don't look after myself. Mara has grown up understanding disability and empathy."
He added: "With marriage in 2014, came a re-enrolment to college, studying journalism and a new lease of life and passion. Three years later, I was editor of a local newspaper. I proved to myself I have the focus and staying power required to establish myself in employment.
"Hearing the harsh reality of my health issues from health professionals still hits me hard, possibly because I can’t escape from these realities.
"In the past, I grew accustomed to not reflecting, not taking responsibilities, feeling protected, and more importantly, not worrying about my health.
"Now, as a father and husband, I have had to grow-up, so to speak, and face these problems directly. Imagine carrying a protruding curved spine around with you every day, take a moment to consider the physical and metaphorical burden that is on my life. You would stick out, quite literally."
John-Paul describes his Kyphoscoliosis diagnosis as painful, exhausting, and hard to accept, but says it also brings strength of character and resilience.
"Anger could dominate me life, asking why me could torment forever. This perspective has allowed for inner strength, resilience, and confidence to grow. I am proud of myself. Family and friends tell me I inspire people, without even realising it. My confidence and resilience are inspiring.
"I still experience niggles, niggling in my mind has been constant since childhood. That niggle is my physical deformity. A constant thorn in my mind. Being raised to have resilience and not to feel less of a person gave me a strong start in life."
He added: "I try to enjoy challenges; I see obstacles and challenges as ways to self-improve and grow stronger. Wake up each morning to do the work of a human being – face life, face fear, accept challenges, always do the right thing, try to be genuinely virtuous.
"I do not pretend anything is easy, I always wrestle with my own thoughts and emotions; that is normal. I believe that meaningful things come through struggle, through adversity, through experience. Slogans and sound bites don’t help anyone, they just add unnecessary pressure.
"I am not advocating for people to bottle things up and struggle through pain just to become stronger. Proper professional help is available and helpful; I have done cognitive behavioural therapy (CBT) and one-to-one professional therapy, which has helped me.
"You don’t need to read every self-help book, attend every seminar, or listen to every ‘motivational’ podcast. Spending too much time and money consuming other people’s opinions and lives might not be the most sensible way forward. People you don’t know, people who don’t know you.
"You already have everything you need. You have your own mind and body, you have access to your own thoughts and feelings. Only you can manage that and enjoy that," he added.
The month of June is all about uniting people across the world to create positive public awareness of scoliosis, promote education, and bring together those affected by the condition.
This month of celebrations peaks on June 25 with International Scoliosis Awareness Day (ISAD), an event launched by the Scoliosis Association UK (SAUK) in 2013.
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