Living with a chronic illness can be difficult enough, without the weight of feeling a sense of responsibility to disclose it to those around us, especially when we are quite affected by our symptoms.
Talking about my MS
I had already been fairly open with those closest to me about my health issues in the run-up to my diagnosis. I’d had to schedule some time off work for an MRI, several GP visits, and Neurology appointments. For me, I just wanted to be as transparent as possible. I trusted my employer, and them knowing what I was going through, as it happened, really pushed away any anxiety I had about my job.
Keeping my friends and family abreast of the situation gave me a support line to rely on. Even if they didn’t know exactly how it felt, they listened and offered comfort throughout the journey, and understood that my capacity had changed - there was a reason I wasn’t being as social.
On the day of my diagnosis, my boss had already reached out in private to ask how I was doing. Following my diagnosis, my boss actually researched MS so they could better understand it, and understand how they could continue to support me in the workplace. It was unexpected, and probably the kindest reaction I can think of.
Since then, I’ve been able to be in control of my diagnosis - I can voice my concerns openly and I’ve always felt heard. I’ve been able to access adjustments in the workplace to allow me to perform at the best of my ability.
Not all reactions have been the same, as sadly there is so much misinformation out there about MS. The fact that it is a different experience for each individual doesn’t help to assuage any common misconceptions and beliefs, and so sometimes the reaction when we disclose our diagnosis can be a negative one - fear, confusion, or worst of all, pity.
Pointers for others with MS
Know that when disclosing your MS, it isn’t your responsibility to reassure someone else. An individual being uncomfortable with the subject of chronic illness has nothing to do with you, and particular reactions often come from drawing comparison to someone that they may know who also has MS, especially if it was from years ago. I myself was the same prior to my diagnosis and my own research. My grandfather had MS and was diagnosed with it long before the current advancements in treatment, so the knowledge of MS that I had was only drawn from my grandfather's case from the past.
Those of us with MS know that our experiences are so completely different. It’s called the snowflake disease for a reason - everyone’s experience is so completely unique, and so, therefore, is the approach to disclosing.
Be as transparent as you’re comfortable being. Some people are empowered by sharing and by being open about their diagnosis, where others prefer to keep it to only those they feel need to know – and, in my opinion, both are valid options. There is no right or wrong way to approach how to disclose your MS to those around you, and it’s normal to want to take your time in opening up to talk about it, especially when it’s new and you’re only just beginning to understand it yourself.
While there have been some odd, and sometimes offensive reactions, for the most part, I’ve found support and understanding and that’s something that I hope everyone with MS can have.
Follow Tara's story by reading her Living with Newly-Diagnosed MS blog.