Advice for the Newly Diagnosed

Advice for the Newly Diagnosed

Being diagnosed with MS a life-changing event. Whether you are a teenager like I was, are in the prime of adulthood, or are later in life, it’s never easy to get that type of news. I was thinking the other day of what I wish people would have told me when I was diagnosed. So I thought I would write this article with the hopes that someone newly diagnosed would find it helpful and useful in those early days.

Give yourself a moment

Give yourself the time you need to let it all sink in. Before you go and learn everything there is to learn about MS, because that in itself can be incredibly intimidating, take a second to focus on yourself. It’s ok to be selfish, and need time alone; it’s ok to cry and wonder, why me. It’s ok not to understand. Know that you can live a good life despite MS. The first thing you need to do is come to terms with the news you’ve been given, breathe, and lean on those who love you most for support.

Find the right doctor for you

With MS there is a lot you cannot control, but you’ll feel at ease doing the things you know you can control on your own. When you’re first diagnosed and get all of the facts, it’s a lot of information to swallow. You can’t believe everything there is to read on the internet about MS, so you need to take control. Find a good neurologist/specialist: find someone who gives you their full attention and who will give you the best care and advice. You want someone that is patient and will answer all of your many questions without making you feel more overwhelmed than you already are. These doctors are in it with you for the long haul, so it’s of utmost importance you find the right one for you.

Take control of what you can

You can’t control the fact that you have MS, but you can control how you react to it. If I could go back in time that’s the biggest thing I would change. I reacted as if nothing was happening. I hid it, and I hid it well. Please don’t do this. The sooner you realize it is life-changing, but it will be ok, the better. Another thing I urge you to take control of is your attitude. At the beginning of my diagnosis, I didn’t have the best attitude. But, I’ve found over the years that a good attitude and finding positivity in the worst of days has been my biggest weapon for fighting MS. Dealing with more difficult symptoms and days, and finding the light in the midst can help you tackle so many things. Also, take control of who is in your life.

Find the best support system

Find family and friends that you can go to for help when you need it. Your life is full of changes at the moment, so find the people in your life that will be your constant. Weed out those who will pull you down and make things harder. You don’t need someone dragging you down right now. You need those that will lift you up. Reach out to your local MS Society, and find others around your same age who understand what you’re going through. I didn’t have anyone in my life around my age that had MS at the time of my diagnosis. I realize now how important it is to have that community of support and understanding. These are the people who can help lift you through the bad days because they truly know what it’s like. There is so much comfort in knowing that someone else gets you, and has been through what you are facing.

Listen to your body and track your symptoms

The ever-changing symptoms are scary, but they are an important part of the process. Everyone with MS has different symptoms; they are unique to you and important to your journey. It is important to monitor your symptoms and write them down so that at each appointment you can give your doctor accurate information. He/she will take this information and use it to best help you. Track medication side effects so you can know what’s helping you, and what is causing more unwanted side effects. I strongly urge you to keep a journal to write these things down, or if you’re like me use the notes section on your phone so it’s always nearby. Listen to your body. If your body is feeling extra sluggish, try changing up your diet or adding exercise into your routine. Diet and exercise have helped my symptoms so much, and I only wish I would have taken them into account sooner. Talk to your doctors about what vitamins can help combat your symptoms. But most importantly listen to the cues your body is giving you. If it’s telling you to slow down and rest, do just that. Find ways to avoid things that lead to relapse. Take care of yourself; it’s what most important and what will help you most in the long run.

Know that everything will be alright

Your life has completely changed, but know that this does not have to define you. This will not stop your dreams from coming to a reality. When first diagnosed at 14, I was terrified that I wouldn’t have the life I had always dreamed of. I was terrified it would stop me from reaching my goals. That’s simply not the truth, though. You still have the power to do whatever you set your mind to. MS is just a part of the journey. It doesn’t have to be a roadblock. Find what motivates you to keep going and remind yourself of that daily. Mine is my son and my family. Whatever yours may be, this is what you will need to help guide you through the hard days. When you are feeling overwhelmed with fatigue and symptoms, those things that drive you to succeed will help get you through. Continue to do your favorite things and live your life, don’t let MS stop you. Drink that bottle of wine, read that book, and take that vacation. The only thing you’ll regret is not continuing to live your best life.

Life with MS is hard, I won’t lie. However, it’s not impossible. Know that you will get through this. Know that you have a community of people just like you that will help guide you and cheer you on. You will find your new normal, and you will find the perfect way to make things work for you. You will have your bad days, but you will get through them. Most importantly, you will get through this, I promise.

XOXO,

Calie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • Julie
    6 months ago

    I wish I would have had such wise advice 18 years ago when I was diagnosed. I tried to learn everything I could about MS right away. I got on the internet and read what I could but at that time I found it so confusing.

    Then I thought talking to a person about their experience. I didn’t know anyone with MS so I thought I would find a group online that would hold my hand. At the time MSN had a lot of groups so I went to the health chats and found MS. I visited several. It felt like they were speaking a foreign language.

    Fortunately, I finally found one that was friendly and answered my question in a way that I understood. I’m still friends with a handful of them and even gone on vacations with a few!

    When I run across someone on the internet that is newly diagnosed and confused about what they’ve been told I try to remember how that felt and try to answer the questions about what their doctor has told them. It really is kind of like a foreign world with its own language.

  • potter
    6 months ago

    Don’t let it stop you from doing the things you really love. When I was diagnosed I started working in my pottery studio more. One of my first major symptom was that I lost my ability to throw. My right arm wouldn’t do what I wanted it to. There is a lot of other ways to work with clay so that is what I did. I will be dammed if I let MS take my clay away from me. I worked so hard to get my fine arts degree, life just kept getting in the way. I kept my old wheel but didn’t do much with it, between the retraining and kicking the wheel it was too hard. Recently a potter friend in California found a bargain electric wheel in my town that was on E-Bay. I bought it and sold my old wheel. I have been working on it every chance I get. So here I am 11 years into my diagnosis, learning how to throw again and grinning from ear to ear. I know many MSers who have given up music, painting or writing when they were first diagnosed and then wished they had kept at it. Potter

  • CubsFan
    6 months ago

    Awesome article. I wish I had this to read when first diagnosed. Really I wish I had found this site in general.

  • Alina Ahsan moderator
    6 months ago

    Thank you for the kind words, CubsFan! I’m glad that you found our community!
    -Alina, MultipleSclerosis.net Team Member

  • Dorry
    6 months ago

    What a beautifully written article. I agree with one NURTURING themselves through whatever challenge you face. This is a good platform for healing. Good tip to keep a journal and that of your symptoms and medication. Unfortunately it is often hard to get good medical care as doctors can only give us patients 10 minutes and then still rush through the appointment. Get good people on your side and only befriend those who are supportive and caring. If someone doesn’t add value or meaning to your life you don’t need them in it. They could be a hindrance and not of any benefit. Which is why the MS website is for those who want to vent and get support. We don’t need people on this site to belittle those who are misjudged as being totally absorbed by their illness. There needs to be greater sensitivity and transparency. This is how we learn and cope with a distressing illness. Diet and exercise play a great part in helping one cope with the daily challenges. Unfortunately I cannot exercise as my legs are too weak and tired. I can’t walk without the aid of two walking canes. But I have discovered how beneficial BODY BRUSHING IS. May be worth exploring. Research it and watch youtube videos for the technique. A lot of pain in the body is due to toxins and some can suffer with toxin overload. (such as myself) Body brushing also stimulates lymphatic drainage so this is a good thing and does no harm. Since body brushing I don’t get out of bed feeling as if I have the flu and don’t want to do anything. I have been better able to do what I need to and rest at pacing myself with everything I do.

  • Yoshitail9
    6 months ago

    This is one of the best articles that has appeared on this site. Great advice. I can only add that I wish I had the discipline to keep up an exercise routine. It’s been 38 years for me and my MS.
    To the newly diagnosed…remain dedicated…keep up the strength in your legs.

  • Harleydog1
    6 months ago

    That’s really a great way to look at this

  • Kym
    6 months ago

    Thank you for writing this. I am newly dx., as of May 2018.
    It is overwhelming and exhausting in the first few weeks. But I am starting to settle into my new normal.

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