I got an email the other day from a woman whose son recently got diagnosed with MS at just the age of 13. 13? Really? That breaks my heart. No one deserves a diagnosis of ANY kind, but why a child? They’re so innocent and young and pure. I was diagnosed at 20 and I thought that was young. The woman came to me asking me what she should do. She was lost, heart-broken and asked for some guidance. I gave her some advice and I thought I’d share it with all of you.
A Multiple Sclerosis diagnosis can be frightening and overwhelming, and while you may feel very much alone, you are not! If you’re newly diagnosed, or know someone who is, these tips can help you deal with the initial shock. Well, I hope they do!
1. It’s Okay to Cry
Go ahead. Scream, cry, be afraid. Let it all out. You’re going to ask yourself, “Why me?” “What did I do to deserve this?” You’re going to cry and cry and cry until you make yourself sick. You won’t be able to sleep for a couple of days, maybe weeks, and you know what? IT’S OKAY. I’ve had MS for over 2 years, and I still cry here and there. Crying and feeling sad is NOT a sign of weakness. Your life was given a hand of cards that you weren’t planning on getting. You have every right to show emotion. Is it even possible to smile after hearing the words “You have MS”? So go ahead. It’s all about you right now.
2. Get Connected on Social
When I first got diagnosed, before I educated myself and googled MS, I immediately turned to social media. I searched #MultipleSclerosis on Instagram and Twitter, and searched for Facebook pages regarding MS. I have never felt so alone in my entire life, but after I turned to social media, I felt a sense of relief from the amount of support I got from other MSers out the
relief from the amount of support I got from other MSers out there. I connected with thousands of people who had the same illness as me. If you’re not online I strongly suggest you make accounts just so that you can create and build new relationships.
3. Get Educated
There are so many myths and misconceptions about MS and without facts, your MS diagnosis can be scarier than it really should be. MS is a chronic illness – chronic meaning there is no cure. But don’t let that scare you. Its an auto-immune disease that affects your central nervous system. Your immune system attacks your own nerves – specifically, it attacks the protective sheath of your nerves, called myelin which ultimately disrupts signals to your brain. When this happens, Myelin is destroyed and replaced by scars called lesions. Think about it this way: when you use an electrical chord to power your television. What happens when mice eat away at the plastic covering the actual wires? Your TV won’t work or if it does, it will be fuzzy and disruptive. That’s MS in a nutshell but the downfall is, were left with 95+ symptoms. But I promise you, it will be okay! You’re probably thinking death sentence or you’ll eventually need a wheelchair. MS is almost never fatal and 70% of MS patients won’t need a wheelchair at all! MS isn’t what it used to be. After you get educated, you’ll learn that it’ll be okay. Visit the MS Society of Canada or The National MS Society for of the information you need to know.
4. Find a Neurologist That You’re Comfortable With
You’ll need a neurologist for the rest of your life. This is your go to doctor that specializes in Multiple Sclerosis. But don’t look at who the best neurologist is in town. Find one that your comfortable with – one that listens to you, understands you and will do everything they can to help you. Oh yeah, find a neuro that will be there for you 24/7. I’ve found neurologists that don’t respond back to my calls and if they do, it’s weeks later. MS is not a death sentence but it is a life sentence, so make sure you search and find the right neurologist that makes you feel comfortable.
5. Don’t Delay MS Treatment
It’s super important to start treatment as soon as possible. MS treatment focuses its attention on how to control symptoms and improve the patients quality of life. Before 1993, there were no treatments for MS. Now there are over 10 of them, including both injections and oral pills. These medications have been shown to “modify” or slow down the progression of MS and lessen the frequency and severity of MS attacks. Learn the functions of each treatment and chose one that both you and your neurologist agree on.
6. Think About Who to Tell
First decide if you want to be private or public about your MS. I personally think being private can cause more harm than good, but that is completely up to you. My family was first to know, then my friends and then my coworkers. I told people I was close with. Figure out who you want to tell. If you’re afraid of what people will think of you that is understandable. I’ve lost friends because of my MS. But the way I look at it is if they couldn’t handle me at my worst then they sure don’t deserve me at my best!
7. Tell Them to Get Educated
What’s the point of people knowing you have MS if they don’t even know what it is? How could they comfort you or support you or understand what you’re going through? Tell them the best way they could support you is for them to get educated. Google it, visit useful websites, watch videos and even talk to other MSers. When I see my family and friends raising awareness and know what I go through then I know they are my true supporters. And that’s what you need right now!
The best for last..
8. Don’t Give Up Hope
Hold On – Pain Ends.
We live in a time where there are so many breakthroughs happening every day. Scientists are racing to find a cure and we must be thankful we have treatments that can help. After you get over the initial shock, you’ll be stronger than you ever thought you would be. You don’t know how strong you are until being strong is the only choice you have. You got this! I like to call MS as a blessing in disguise – because it showed me how strong I was, strengthened my relationship with God and brought me some of the best of friends I could ever imagine.
I hope that helps a little bit. If anyone else could think of any pointers or tips to give to newly diagnosed MS patients, or to those affected, please comment! What would you do differently when you got diagnosed? What would you tell yourself?