After you get a new diagnosis and are coming to terms with a new way of life, the next part is especially tricky.
You have to tell others.
“Urgh. I don’t want to tell anyone! Why do I have to?” I’ve had this conversation with myself more than once.
The truth is, your multiple sclerosis (MS) will change a lot of different areas of your life. It’ll change what you can and can’t do, and that’ll vary from one day to the next. Some symptoms will be invisible (like brain fog, weakness, or tingling) and some will be more obvious (like balance and walking issues). A lot of the time, it’s not something you can hide. Your symptoms may change; you may also develop new symptoms.
But how do you tell someone outside of your close family and friends about your MS diagnosis?
You have two choices: You can show you’re OK with it and play it down like, “Yeah, I’m OK. It sucks, but I’ll get through it.” Or you could go into a pity party with a chorus of “Ugh, my life’s over!”
What came out used to depend on my mood. When I first got my diagnosis, I was not positive at all. Thoughts of what I’d lost consumed me.
Whenever I told anyone anything about my MS diagnosis, I got a similar set of responses. During your conversations about MS, I can almost guarantee someone will make one of these comments, which will likely feel very unhelpful. I’ll also explain why people say these things and what a better response could be.
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