To the New Multiple Sclerosis Patient
Dear newly diagnosed multiple sclerosis patient,
Welcome to a club you never wanted to be in, a club that none of us want to be in, or even visit. So you just got told you might have, do have, or are very likely to have multiple sclerosis (MS).
Now you get to have your moment to freak out. Seriously. Cry. Scream. Eat a gallon of ice cream. Live off of Starbucks and Dr. Pepper for a week. Wear the same pajama pants and oversized T-shirt for three days and keep telling yourself your hair isn’t “that dirty.” Refuse to answer your cellphone for a week and only send out texts that say, “I’m fine.” Do whatever you need to. You’ve just been handed a bombshell and you deserve to handle it however you want for approximately seven days. Then you must get your shit together, because this is going to be a journey for which a positive mindset, and a wicked sense of humor are required.
Regardless of how you were diagnosed — whether it was during a whirlwind five day hospital admission following optic neuritits, where you saw 999 different physicians who came in and threw 768 syllable words at you, then walked out and left you in shock — or maybe you’ve been fighting for this diagnosis for years and the initial words, “You have MS,” were the equivalent of jumping into a ice bath in the middle of winter — it’s OK to ask 37,493 questions. It’s OK to have to email or call your physicians office multiple times to ask the same questions or have them explain things just one more time until it sinks in.
I was diagnosed a little over two years ago, three months after starting my first job as an registered nurses. There are still days I call my primary care doctor back just to have him repeat what he told me no less than two hours earlier, and I ask him more questions. Do whatever it takes to give you peace of mind. It’s OK, and its normal. Open the notes app on your phone and start a list of questions you have, and don’t be afraid to ask them. This is all new to you, and you need reassurance as much as answers.
People will surprise you.
If there was one thing I wasn’t expecting, it was the way people would shock me. Over the last two years I’ve had a few people who I thought would have stayed through anything simply walk away…but you know what? They were replaced with people who walked in. People who I wasn’t expecting to walk in. Coworkers, family, childhood friends whose contact had been lost, people from my hometown. They all stepped up and covered me in love, support and prayers. And they’ve never left. They’ve stayed through the good days, the bad days, the hot mess express moments, and the melt downs, the projecting. They’ve stayed and been so understanding. I am internally grateful. Don’t push away the people who love you. Let them. You need it. You deserve it.
It’s OK to have bad days. It’s OK to temporarily give up.
Seriously, like I said in paragraph one, you’re allowed to cope how to you want to. You’re allowed to have days when you can’t be positive what so ever. But keep in mind, they better be short lived. Tomorrow that sun is coming up, regardless of how you feel, so you might as well get up, pull yourself together and go out and participate.
Learn how to be your own advocate.
This. This is quite possibly the most important thing I can share with you and sadly the number one thing I myself struggle with. Throughout this journey you are guaranteed to meet some really good physicians and some really bad ones. You know your body. You know your symptoms. Never allow a bad physician to dismiss you, belittle your symptoms or make you feel insignificant. Be strong. Be brave. Stand up for yourself. You run this show. If you don’t agree with their plan of care say something. Don’t ever allow someone to force you to do something just because they have the letters “MD” behind their name.
And finally, find something to believe in, something or someone to fight for, and cling to it.
Whether you’re religious or not, you’ve got to have something to place your hope in. Whatever that may be, a higher power, faith, science, or Nutella. I could care less what you believe in, just know you’re going to have some hours when that’s all you have to cling to. That and your “why.”
Your why is the something or someone you fight for, whether it’s your spouse, your children, your future, or just to say you kicked MS ass. Find your why and feel strongly about it, because there will be some hours, some days, and some moments when that is the only thing that will pull you through. But you will pull through, even when it feels impossible, even when it hurts, even when it’s hard, even when it all just falls apart, you will make it through, and it’s going to be OK.
So once again, please accept my warmest welcome to this ugly, sucky club, but please also know you won’t walk out of this storm the same person who is walking in right now. You will walk out a more humble, stronger, and beautiful person. This journey isn’t for the faint of heart, but it does have the potential to be a beautiful and glitterful one.
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