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.
1. When I share my personal story, the most common answer I receive is: ‘MS? Oh, my sister’s friend’s boyfriend’s neighbor has that!’
And yes, someone has said that to me.
It comes up every time. Everyone seems to know someone with your illness. I used to find it quite frustrating until I realized why people do that.
They are trying to find some common ground with you. They want you to know you’re not alone. They may not understand MS or what it means for you (most people don’t), but in their minds, knowing someone else with it is enough to relate to you.
A more helpful thing to say could be: “MS? I think I’ve heard of that, and I might know someone with it, but I’m not sure what it is. How does it affect you?”
2. This kind of response is always interesting: ‘You have MS? I know someone with that. She swears a plant from Peru cured her.’
Yep, the “miracle cure.” Some of the “cures” suggested are quite hilarious. For example, I was once told that lying in a hot bath of rose petal-infused water would, for sure, take all my symptoms away. What they didn’t understand was that my symptoms often get worse with heat.
If someone says something like this to you, remember they are — annoying as it might be — just trying to help.
An alternative, more helpful thing you could say is: “MS? I think I’ve heard of that. I’m not sure what the treatments are, though. I’m sure there must be a lot out there. I know of someone with it. I’d be happy to introduce you. If you want to talk about it, I’ll happily listen and learn.”
3. Finally, the classic: ‘You don’t look sick.’
You’re thinking, “What exactly is a sick person supposed to look like?” This one can be frustrating. Again, some people mean this to be a compliment.
A more helpful thing to say could be: “Oh, sorry, I had no idea. What is MS? How are you feeling right now?”
The critical thing to note here is that we often think people are saying the “wrong thing,” but in reality, they just haven’t experienced the situation before and aren’t sure what to say.
We speak about this a lot on “The DISabled to ENabled Podcast.”
Have you ever received responses like these?
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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