Last week on Twitter, Ohio Health posted a statistic stating that there are about 200 people newly-diagnosed with MS every week in the United States. Seeing that statistic completely broke my heart. Like most people living with multiple sclerosis, I will never forget that time in my life after receiving my diagnosis. I know how difficult and confusing life can be after learning that you have MS.
My heart goes out to those 200 people and to those families who are now trying to sift through all of the information and the multitude of feelings that are swirling about them. I just want to hug all 200 of these newly-diagnosed people (and their family members) and let them know that they are going to get through this time and everything is truly going to be ok.
Because I can’t literally hug all of these people and then look them in the eye and reassure them, I came up with a list of 10 pieces of advice that I would give to someone newly diagnosed with MS:
1. Take it one day at a time. Allow yourself to feel what you’re feeling. It is all normal and everything that you are feeling is valid. Take your time because everyone deals with it in their own way and in their own time but know that with every day, it will get easier.
2. You are stronger than you know. You will discover a strength that you had no idea even existed. Whether this is pure survival instinct or if there is something to the theory that you are only given what you can handle, I’m convinced that people living with MS are some of the strongest people I know.
3. Your life isn’t over. Like your new-found strength, you will discover a new life as well. Yes, you will have to learn a new way of living and your life will be different now, but that doesn’t mean it has to be worse because of multiple sclerosis. You have a choice now on what you’re going to do with this disease and how you’re going to fight it. To me, living life and truly enjoying and valuing every bit of it is the best way to fight MS.
4. You are never a burden to your family and friends. Never think that you are a burden to those closest to you. They love you and want to support you. Know that they are also handling your diagnosis and learning what it means to you and to them. They may be unsure of how to interact with you but like you, they will also work their way through this time.
5. You will learn who is important in your life. Yes, sometimes there are those people who don’t understand, or don’t try to understand, your life with a chronic illness. I’ve found that through this, you learn who is a true friend. Those are the ones who are worth it. Let the rest go and try not to look back. You will gain new friends on this journey who will understand and get it, and support you in any and every way possible.
6. You are never alone. There are a lot of like-minded people out there dealing with some of the very same things. Don’t ever stop looking for support because it is out there. I found it hard at first to find a positive group of people living with MS but I did. There are loads out there on social media sharing information, empathy and support each and every day. There are many people who have been where you are now, and we are all ready and willing to help you during this time.
7. You will learn how to listen to your body. You will get extremely in tune with your body. You will know when something is off and may even learn warning signs or triggers. You’ll learn how to overcome any limitations in order to continue to do what you want to do. If not, you will adapt and find a new path.
8. You can still be physically active. Many who are newly diagnosed think that they can no longer be physically active. It has been proven that physical activity has positive effects on multiple sclerosis and healthcare practitioners encourage their MS patients to move as much as possible. Many newly-diagnosed fear life in a wheelchair or with a cane. Know that most people with MS will never need an assistive walking device, and if they do, these devices offer freedom and continued self-reliance.
9. MS is not a death sentence. MS is not fatal and most people live long, fulfilling lives despite the disease. It used to be thought that people living with MS had a shortened lifespan but with the advances in medical science, people with MS are living just as long as the general population.
10. Always maintain hope and never give up on your goals and dreams. You are diagnosed at a time when there are many exciting developments happening in MS research and treatment. MS can be successfully managed and is not the disease it used to be.
Multiple sclerosis is not a brotherhood or sisterhood that I would like to share with anyone but I truly believe that we can beat this disease together. There will be 200 newly-diagnosed this week — a number that is way too high in my opinion. We all need to keep fighting and maintain hope for a cure. There will be a cure.
Share with us. What would you want someone newly-diagnosed with MS to know? What piece of advice would you add to the list?