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Dear Newly Diagnosed Me,

Welp. This sucks. Remember that time you were sideswiped in your car and you had no idea that you’d live with chronic back pain every single day going forward? Yeah, this is gonna suck more than that did. And it’s going to hit you much harder than that accident did, not over a long period of time and trials.

 

Those four words “You have Multiple Sclerosis” are absolutely going to change your life forever.

 

Cry. Scream. It’s okay to feel all of those feelings. But know, deep deep down somewhere that you probably can’t feel right now, that you are still going to live a good life with chronic illness. In fact, you’re going to live a GREAT life.


Is every day going to be great? Nope. A lot of days are going to be complete suckfests. You’ll need more surgery (not even related to your Multiple Sclerosis), you’ll have new symptoms that don’t go away. Remembering things that came easily to you before will now be hard. But no one will be more frustrated with you than you are. You won’t listen to your body, you’ll overdo it, and you’ll pay for it.

 

Trusting your body and your mind will be harder than you ever imagined. Symptoms and fatigue are unpredictable. You will lose friends. Learning to cope with your Multiple Sclerosis will take time, and you’ll grow distant from people. Your depression will be the worst it’s ever been and you’ll have some bad days. Plus, you’ll start living with anxiety, which isn’t something you ever had to face before.

In fact, when you tell someone you have Multiple Sclerosis, when use your cane, the handicap service at the airport, or know the secret pathways through the hospital, people will stare at you in disbelief. ‘But you look SO GOOD’ they’ll say. And they’re not wrong. You can have a chronic illness and still be cute. Who said that you suddenly ‘look sick’ when you have Multiple Sclerosis? Or any other invisible disease for that matter? Invisible diseases like Multiple Sclerosis, Degenerative Disc Disease, Depression, Anxiety, and so many more are referred to as INVISIBLE for a reason. And yes, you WILL get frustrated when people (lots of them) tell you how good you look, or how brave you are because you know they mean it as a compliment, but it’s frustrating as hell when you feel like someone doesn’t believe you.

 

Hope is not lost. Life’s hard, choose joy anyway, right?

Rocking my Chronically Ill Badass t-shirt and my Tysabri infusion to help slow the progression of my Multiple Sclerosis
Rocking my Chronically Ill Badass t-shirt and my Tysabri infusion to help slow the progression of my Multiple Sclerosis

You’ll learn that sharing your story, your diagnosis, and your struggles will resonate with people you don’t even know. The kindness and empathy you receive from complete strangers will move you beyond words.

 

You’ll learn to re-prioritize your life, your business, and what brings you joy so that you can actually do things you love AND listen to your body’s needs. Thankfully, you will learn (super quickly) to become an advocate for your own health (and others). You’ll have an amazing team of doctors that advise you to combine holistic therapy and traditional therapies as you see fit. Spoon theory will become a valuable term that helps you to describe your capabilities to your family, friends, and doctors.

 

You’ll quickly learn that you don’t have energy or ‘spoons’ to waste on negative people, anger, or drama. You will surround yourself with people who lift you up, who support you, and who empathize with you, even if they can never truly understand you. Most importantly, you’ll never be alone, and you’ll work to make sure that no one else facing an invisible illness feels alone either.

 

Life isn’t all sunshine and rainbows. Some days are still going to suck with Multiple Sclerosis and chronic illness. But you’ll learn to find more JOY in the mediocre days, and truly savor the GREAT in the good days. You won’t find balance (spoiler alert: it doesn’t exist), but you will find joy again. You’ll help people more, love stronger, and learn to ask for help, even if you still hate it, and you’ll thrive.

 

You’ve got grit, and you’re going to figure out how to give yourself the grace that you so freely give to others. Plus, you’re pretty chronically badass too. 

 

Do you have a chronic illness? What do you wish you could tell your newly diagnosed self?

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