Things People Say When You Tell Them About Your Diagnosis

Things People Say When You Tell Them About Your Diagnosis
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After you receive a diagnosis and are coming to terms with a new way of life, the next part is especially tricky. 

You have to tell others. 

“Ugh, 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 that your multiple sclerosis will change many different areas of your life. It’ll change the things you can and can’t do, which will vary from one day to the next. Some symptoms will be invisible, such as brain fog, weakness, and tingling, while others will be more obvious, such as balance and walking issues. Much of the time, it’s not something you can hide. Your symptoms also may change, and you may develop new ones. 

But how do you tell someone outside of your close family and circle of friends about your MS diagnosis

You have two choices: You can show you’re OK with it and downplay it by saying something like, “Yeah, I’m OK. It sucks, but I’ll get through it.” Or, you could start a pity party with something like, “Ugh, my life is over.” 

In my experience, how I replied depended on the mood I was in. When I first received my diagnosis, my attitude wasn’t at all positive. Thoughts of what I’d lost consumed me so much that I became lost in depression.

Whenever I told anyone about my MS diagnosis, I’d receive similar responses. I can almost guarantee that someone will say one of the following things to you at some point in your conversations about MS. Many of the comments will seem unhelpful. I’ll also talk you through why I think people say these things, and what they could say to better respond. 

The most common response I’ve received when sharing my personal diagnosis story is, “MS? Oh, my sister’s friend’s boyfriend’s neighbor has that!” 

Yes, someone actually said that to me. 

Everyone seems to know someone with your illness, and I used to find it quite frustrating until I realized why people do it: They are trying to find common ground with you. They want you to know you’re not alone. They may not understand what MS is or what it means for you — most people don’t — but in their minds, they think that just knowing someone else 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?”

Another response that always is interesting is: “You have MS? I know someone with that, she swears a plant from Peru cured her.”

Yep, the “miracle cure.” I find some of them to be hilarious. For example, someone told me years ago that lying in a hot bath infused with rose petals would cure my symptoms. They didn’t understand that my symptoms worsen with heat.

If someone says something like this to you, remember they are — annoying as it may be — just trying to help. 

Alternatively, a more helpful thing to say might be, “MS? I think I’ve heard of that. I’m not sure what treatments exist for it, though. I’m sure there must be a lot out there. Also, 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.”

Finally, there’s the classic, You don’t look sick.”

You might be thinking, “What exactly is a sick person supposed to look like?”

This one can be frustrating. Again, some people mean it as a compliment. 

A more helpful thing to say might be, “Sorry, I had no idea. What is MS? How are you feeling right now?”

The critical thing to note here is that we often perceive people to say the “wrong thing,” but in reality, they just haven’t experienced this situation before and aren’t sure what to say. 

We discuss this topic a lot on the “DISabled to ENabled” podcast. Join us! 

Have you received responses like these? Please share in the comments below.

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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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

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