There’s no way to fully articulate the fear, confusion, sadness, and anger that come with hearing the words, “You have multiple sclerosis.” Who knew four words could carry so much weight?
Simply said, these feelings are very real and it will take some time to tame them.
We’re here to tell you that, regardless of how complicated or intense those feelings are, you will eventually come to terms with them — and we’re living proof of that.
We each remember what it was like nearly two decades ago when we sorted through the same emotions you’re dealing with today, not knowing the impact MS would have on our health. Our bodies. Our abilities. Our families. Our friendships. Ourselves.
Looking back now, we’re both grateful that we were able to move forward regardless of what this chronic disease of the central nervous system has thrown at us.
In fact, we just celebrated our 13th wedding anniversary and truly couldn’t be happier. That’s right! Unbelievably happy even though we both have MS — Jennifer has secondary-progressive MS and can no longer walk, and Dan has relapsing-remitting MS and still is working full-time.
In the spirit of our anniversary and how lucky we felt to have found each other, here are seven things (that’s a lucky number, right?) we want you to know about MS to help give you perspective and the confidence to push through the unknowns that lie ahead.
Remember: You are the same person you were before your diagnosis
And you will be okay. Dan remembers sobbing the entire day after he was diagnosed, but he woke up the next morning with a sense of peace and purpose. He realised the diagnosis didn’t instantly make him less healthy. If anything, he was relieved to have the diagnosis so he knew the reasons for his symptoms and what he had to do to wage a counter-attack against MS.
Yes, believe in the disease. But believe in yourself more
MS is the real deal and can be relentless at times. The same can be said about you — so always bet on you. Having a progressive type of MS and losing her ability to walk didn’t stop Jennifer from going to graduate school and earning her master’s degree. And Dan didn’t start running in 5K races until after he was diagnosed with MS. Sure, the disease had to be factored into these accomplishments. But it didn’t have the power to stop us from trying and making them happen. In some ways, it may have motivated us even more to make them happen.
Your battle begins today, and there is strength in numbers
Like any good soldier, you need to be prepared to fight MS every day, but you can’t go it alone. Open yourself up and build a strong support team to help you through every aspect of the disease. This team might include everyone from friends and family to doctors, dietitians, counselors, physical therapists, and other people living with MS. This disease is going to come at you in many directions, so it will help to build a diversified arsenal of resources you can turn to.
You still can (and deserve to) have fun and be happy
Adjusting to your new realities can be overwhelming at times, but don’t allow MS to consume you and prevent you from enjoying life. We always do what we can to have fun, despite MS. Whether it’s as simple as watching a movie at home or taking a fishing trip on a barrier-free accessible boat, we never let this disease steal our fun.
Don’t give the disease more credit than it deserves
Here’s the reality: Whether or not you have MS, you’re going to get tired, sick, emotional, headaches, confused, worn out, and have sore muscles from time to time. Even before MS, you likely tripped and fell, dropped books, spilled a glass of water, and had trouble sleeping through the night. MS is not the be-all, end-all reason for your problems. Always assuming it’s MS may lead to missing the diagnosis of a more treatable condition.
Listen to and take care of your body
Now more than ever, you need to respect your body and what it is telling you. Sure, there will be times when you need to push it as much as you can, but always be mindful to not overdo it. Start by watching your diet, getting enough rest, and exercising. When Jennifer was first diagnosed, she focused on losing weight so that if her disease progressed it would be easier for her to do functional daily activities.
Truly, ignorance isn’t bliss when it comes to living with MS. It’s a complicated disease. Knowledge is power when it comes to advocating for yourself, whether it’s knowing what questions to ask your doctor about a new treatment option or having a conversation with your friends about the effects of heat on your body. Don’t rely on rumours or hearsay, but turn to credible sources, such as your healthcare team or evidence-based websites and journals, to empower yourself with information.
UK/MED/18/0269 September 2018