At DHU Healthcare, we are committed to fostering an inclusive and supportive work environment for all our employees. Today, we would like to share the story of Ian Hopkins, one of our dedicated IT Application Support Analysts.
Ian's experience with Myotonic Dystrophy, a rare genetic disorder affecting 1 in 12,000 people, sheds light on the challenges of living with a hidden disability. Despite the condition's 60 variations and its often late-onset symptoms, Ian has persevered and continues to excel in his role at DHU. Here, in his own words, is Ian's journey.
“My journey with Myotonic Dystrophy began when I was 21, though it wasn't officially diagnosed until I was 25. Initially, I noticed some weakness in my wrist. Having never been much of a gym-goer since I was 14, I didn't think much of it at first. However, I began to see that my bicep curls were not the same as before, with the weights slowly slipping from my hand. By the time I was diagnosed, my forearms were thinning due to muscle wastage. It wasn't until I turned 28 that my legs began to show signs of being affected.
“Living with Myotonic Dystrophy can be challenging. It is an untreatable, inheritable, and progressive condition. Despite its slow progression, it still impacts my daily life in significant ways. People might not notice my condition if they pass me in the corridor, although they might see a slight foot drop. To maintain my movement and mobility, I do different exercises every day.
“Working at DHU Healthcare has been a turning point in my life. It is the only place that has truly accepted my condition and supported me throughout my journey. From the beginning, my line manager has been incredibly understanding, ensuring that I have everything I need to do my job effectively. During the COVID-19 pandemic, DHU made adaptations for me, providing the necessary equipment to work from home. Now, I only come into the office for occasional meetings.”
Understanding Fatigue Through the Spoon Theory
“One of the best ways I can explain what it's like to live with fatigue from Myotonic Dystrophy is through the spoon theory. Imagine you start the day with a certain number of spoons, each representing a unit of energy. Every activity you do, whether it's getting dressed, making breakfast, or going to work, costs a spoon. Unlike most people, who seem to have an endless supply of spoons, my supply is limited. Once I run out of spoons, I'm out for the day. It's not something you can just push through or recover from quickly. This makes planning and prioritizing my activities crucial, as I need to make sure I don't run out of spoons before the day's end. It's a constant balancing act, but it helps me manage my energy and make the most of each day.
“Despite the support I receive at work, I still face daily challenges. I am prone to tripping and have to be very careful when I walk to avoid injuries. Swallowing and digestion are also affected, and fatigue is a constant battle. Fatigue, in particular, is difficult for people to understand. It's not just tiredness; it's a depletion of energy throughout the day, often explained by the spoon theory. Fortunately, DHU has been flexible with my medical appointments and working hours, as long as I complete my contracted time.
“On September 15th, 2021, the world celebrated the first International Myotonic Dystrophy Day. This day is important as it raises awareness about this rare illness that many people have never heard of. My story is just one of many, and I hope it sheds light on the reality of living with a hidden disability.”