Receiving a life-altering diagnosis is never easy. When I heard the words "You have Multiple Sclerosis," it felt like my entire world had been upended. I was 31 at the time, and the shock of that moment is still etched in my memory. But what made this moment even more challenging was the prospect of having to disclose this life-changing news to my family and later, to the world.
The Initial Shock and Selective Disclosure
Initially, I decided to keep my diagnosis a closely guarded secret, known only to my family. The thought of sharing such life-altering news with anyone else was daunting. The neurologist who delivered the diagnosis didn't have the most reassuring poker face. In fact, I distinctly remember him grinning, which must have been his unique way of coping with the difficult task of sharing bad news.
Telling my family alone was a big deal, and their reactions were diverse. Some were incredibly kind and supportive, while others were surprisingly unsympathetic. These initial reactions gave me a taste of what disclosing my diagnosis to others might entail.
The Decision to Keep It to Myself
Instead of revealing my diagnosis to a wider circle, I chose to focus on moving forward with my life. I tried to put the idea of Multiple Sclerosis behind me, accepting that symptoms like bladder problems and fatigue were now a part of my daily life. At that point, I felt that disclosing my condition might not add any value to my life. In fact, it might complicate things further.
As time passed, I decided to confide in a select few as my journey with MS continued. However, I soon realized that sharing my diagnosis often led to mixed results. Once you've revealed that you have MS, you can never take it back; it's out there for the world to see, and those who know can choose to share this personal information as they see fit.
The Turning Point: The MS Limp and Swagger
My perspective on disclosing my MS diagnosis shifted significantly when I started experiencing more visible symptoms. The MS limp and swagger became noticeable, and people began to comment, asking if I was okay. At this point, there was no going back. I had to say that I had Multiple Sclerosis.
Living Well with MS
Today, my focus has shifted from the fear of disclosure to living the best life I can with MS. Managing the visual symptoms like the limp and swagger has become a part of my daily routine. I've learned that while the decision to disclose your condition is deeply personal, it should always align with your comfort level and the impact it has on your life.
The Dilemma of When to Disclose
The issue of when to disclose your MS diagnosis is a common concern. People often wonder when to tell friends and colleagues. In my experience, I've found that most people may not offer special treatment or understanding just because you have MS. If I had the chance to go back and do it all over again, I would still take the same path. I might even choose to disclose less with friends until the situation necessitated it.
In the end, the decision of when and to whom you reveal your MS diagnosis should be guided by your own comfort level, needs, and the specific circumstances you find yourself in. It's your journey, and you should feel empowered to navigate it in the way that feels right for you. Disclosure is a personal choice, and it's essential to prioritise your well-being and comfort above all else.