Living With A Non-Visible Disability - A Word From Bill
Bill Scott
Dec 5, 2023
Living with any type of disability can be hard. It requires you to understand where your body’s limits are, and for you to adapt and learn how to navigate life and the world around you in a way that doesn’t lead to your body being impacted in a negative way. When it comes to non-visible disabilities, this can often be even more of a challenge. With visible disabilities, people can see the evidence in front of them as to why you may need certain accessibility requirements. This isn’t always obvious or apparent when you are living with a non-visible disability.
Bill, our Product Designer here at Sociability, lives with a non-visible disability. This blog post is one written from a place of lived experience, and we hope that those of you in our community living with your own non-visible disabilities can identify and relate to Bill’s experience.
Over to you, Bill!
Bill, our Product Designer at Sociability, lives with a non-visible disability every day
Hi, I'm Bill. I've been working at Sociability for five months as a Product Designer. My role is all about designing our apps and making them as user-friendly and engaging as possible for you, our community, to get the most out of them! I have Crohn's Disease, a non-visible disability where parts of my digestive system become inflamed. It's one of the conditions commonly referred to as Inflammatory Bowel Disease (IBD). Unlike some other health issues that are more visible, Crohn's works quietly, hidden inside the body.
What Does Crohn’s Disease Look Like?
This condition means dealing with inflammation in the gut, which can cause various symptoms. There are days when I experience intense stomach pains, frequent trips to the bathroom, and a general feeling of exhaustion. It's a rollercoaster, with some days being better than others.
The tricky part about Crohn's is that doctors don't exactly know what causes it. They believe it's a combination of genetics, how my immune system works, and environmental factors. It's not just about having a sensitive stomach; it's a complex condition affecting many parts of life.
Since Crohn's Disease doesn't have outward signs, its challenges are often invisible to others. That's why it's so important to have understanding and support from those around us who live with this condition.
How I Got My Crohn's Disease Diagnosis
At first, doctors didn't take my complaints seriously. I remember one doctor brushed it off as mere heartburn. But even then, I knew something was off. After all, I was pretty sure my heart wasn't supposed to be causing this much trouble in my stomach. It was a confusing and frustrating time. I knew something was wrong, but without a proper diagnosis, I was left in the dark, trying to make sense of the pain and discomfort that had become a constant in my life.
In my case, it took about six months to get a proper diagnosis of Crohn's Disease. While this felt like an eternity at the time, I've come to realise how fortunate I was in this regard. Through talking to others with Crohn's, I've learned that many go undiagnosed for years, struggling with their symptoms in silence and without understanding. My relatively quick diagnosis was a crucial turning point. It allowed me to start addressing my condition with the right treatments and lifestyle adjustments. This isn't just about luck; it reflects a broader issue within healthcare, where non-visible conditions like Crohn's often go unrecognised for far too long.
A young Bill in hospital, being treated for his Crohn’s Disease symptoms
My Experience: Living With Crohn’s Disease
Living with Crohn's Disease is like navigating a maze with moving walls – you never quite know when the next turn might come. This unpredictability has had a profound impact on both my personal and professional life. With time, I've developed a deeper awareness of what works for me and what doesn't. This knowledge has empowered me to control my health and well-being more. It's a continuous process, but knowing more about my condition has made a significant difference in my life.
On a professional level, while working at Sociability, I've had to find a balance between my health and career ambitions. There have been days when I had to work from home or take breaks due to a flare-up. It's a constant learning process, figuring out how to stay productive while not overexerting myself.
Bill now enjoys his life to the fullest, and especially loves being active!
What I’ve Learned About Living With A Non-Visible Disability
Living with Crohn's has taught me resilience and the importance of self-care. I've learned to listen to my body and prioritise my health, fostering empathy towards others facing similar struggles.
Recognising and diagnosing a disability early can make a significant difference. For me, it meant beginning a journey towards managing my symptoms more effectively and learning to live a fuller life despite the challenges posed by this condition.
Knowing what is wrong is only half the battle. Understanding my body better and identifying trigger foods have been immensely helpful. It's been a journey of learning and adapting, figuring out how to manage my symptoms, and making peace with the ups and downs of Crohn's Disease.
It’s important to know how certain activities will impact your condition. My favourite things – spicy food and craft beers – are, ironically, my trigger foods. So now, whenever I decide to indulge, I have to be extra cautious about what I'm doing later or the next day.
5 Tips For Others Living With Non-Visible Disabilities
Living with Crohn's Disease has imparted some valuable lessons that I believe can be beneficial for others with non-visible disabilities. Here's my advice based on personal experience:
If Your Body Doesn't Feel Like It, Don't Push It: Be honest with yourself. If you're not feeling up to a task or activity, it's okay to step back. Pushing beyond your limits can often do more harm than good.
Educate Those Around You: I've found that talking about my condition, often with a bit of humour, helps open up conversations and makes me feel more at ease. It's a way to let people in and help them understand what you're going through, fostering empathy and support.
Build or Find a Support Network: A strong support network has been a cornerstone of my journey. This network can include family, friends, healthcare professionals, or others with similar conditions. You don't have to navigate this path alone.
Focus on What You Can Control: Stress can trigger Crohn's, so I remind myself to focus on the present and what I can influence. Worrying about things beyond my control is counterproductive. Concentrating on the here and now helps keep things manageable.
Celebrate Small Victories: With Crohn's, it's crucial to acknowledge and celebrate the small wins. Enjoy the good days and savour the moments when things are going well, because the future can be uncertain. These celebrations can be little reminders of your resilience and strength.
Each of these points reflects a part of my journey and understanding. Remember, your experience is unique; finding what works best for you is vital.
Best wishes,
Bill
Do you or someone you know have a non-visible disability? Has this blog post resonated with you? To learn more about Sociability and the mission we have for the disabled community, drop us a follow and join our community on Instagram, Facebook, Twitter, and LinkedIn!
