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.
How do you feel before getting an MRI done?