What I Wish I Knew When First Diagnosed with MS
Hearing that you have MS can turn your whole world upside down. It is so much to take in. All the questions. The uncertainty. And the emotions. Shock. Anger. Fear. Sometimes even relief – now you have a name to put with what you are feeling.
We asked our MultipleSclerosis.net community what they wished they knew when they were first diagnosed. Here is what they told us.
The first person I told about my MS diagnosis was my:
Finding support can be difficult
At times, a multiple sclerosis diagnosis can make you feel like you are all alone. How do you find support? And not just any support – the right support.
The internet and online forums can be a tremendous help to many living with MS, connecting people around the corner and around the world. One of the challenges? Not all information is created equal. Trying to sift through everything, hoping to find accurate information, can feel like a second job.
Sometimes, even doctors can seem like barriers in the support category. Many in our community mentioned that they wished their doctors better explained the symptoms, treatment, and progression of MS. Or that they would just say, “Hey, it is going to be okay.” Finding a neurologist who will partner with you in your care is essential.
“I wish the team of doctors working on me for the last six months actually understood and believed some of my symptoms.”– MultipleSclerosis.net Community Member
Where did you find the most helpful info on MS?
Missing out can be hard
Canceling plans? Yes, there will be days you may have to say no. Especially when you are experiencing a flare.
You may feel like you are missing out. Missing out on celebrations. Doing the things you enjoy. Spending time with the people you love. You may worry: will friends and family slowly turn into strangers right before my eyes? Loved ones do not always know what to do or how to help. Even the best-intentioned friend or family member can say hurtful or insensitive things out of frustration.
I miss the old me. Many in our community shared this sentiment. The truth is that life changes after an MS diagnosis. There are ups and downs – the unpredictability can be exhausting.
“MS robs you of so many things, like the memory of what life was like before diagnosis.”– MultipleSclerosis.net Community Member
Be gentle with yourself
With MS, there will be okay days and not-so-okay days. When those hard days hit, it is important to give yourself a break. Be kind to yourself.
Dealing with the uncertainty can be overwhelming. One thing our community agrees on: life goes on after receiving an MS diagnosis. What has helped some in our community? Finding happiness in the small, simple moments.
“Life is not over just because of my diagnosis. But I decide if I am going to be a victim or not.”– MultipleSclerosis.net Community Member
Beyond the diagnosis
There is no doubt about it: getting an MS diagnosis is life-changing. Go ahead and let yourself feel whatever it is you need to feel. Take the time you need to process and cope. And, when ready, seek out the support of groups like MultipleSclerosis.net to connect with others who understand.
Did any friends or family drift away since you received your MS diagnosis?