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Newly Diagnosed

Facing MS: Real Talk on Being Newly Diagnosed

September 29, 2023

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Facing MS Real Talk on Being Newly Diagnosed

When you’re newly diagnosed with multiple sclerosis you’re often faced with decisions that you don’t feel qualified or ready to make.

Questions like…

  • Which medication should I take?
  • Are the side effects going to be worse than MS?
  • Should I just start with diet? Is this diet even legit?

You’re making life altering decisions at a time when you can’t even think straight.

You’re trying to wrap your head around what is happening to your body and make major decisions about your future.

The Overwhelm of Being Newly Diagnosed with Multiple Sclerosis

When I was diagnosed with RRMS in 2016, I remember thinking this body that I had been living in for 36 years, now feels like a complete stranger – and one that was betraying me.

My immune system is really attacking my brain?

You still look the same on the outside but the MRIs and spinal tap told are telling a different story, right?

Personally, I never considered myself immune to the troubles in this world, but I also never expected to be diagnosed with Multiple Sclerosis.

And I’m guessing you didn’t either.

But now it was part of your life… for the rest of your life.

And as you’re making all of these medical decisions, there’s one worry on your mind that your doctor can’t address.

And because for one first times in your life you likely don’t have a single friend or family member who could truly understand what you are going through either, you don’t know who to ask.

Questions When Newly Diagnosed with Multiple Sclerosis

But the question and the fear that surrounds it builds.

You’re scared that MS is going to change the person you are today and rob you of the person you envisioned for your future.

I don’t know the specific questions on your mind, but mine went something like this…

  • Will I still get married?
  • Will I still be able to get pregnant and be the fun, active mom that I’ve always wanted to be?
  • Will I still be able to take my dream trip to Italy?

Maybe you’re wondering…

  • Will I still be able to run that marathon, or do I now need to be grateful just for the ability to walk?
  • What about my career? Will I still climb that ladder or will this diagnosis put a cap on my dreams?
  • Will people start to look at me differently?
  • Will I always be ‘that person with MS’ to others now?

Listen I’m not sharing this to be doom and gloom, I’m sharing this because we need to give voice – to acknowledge – that this is a very real experience when diagnosed with MS and most people don’t know who to turn to talk about it.

The Grieving Stage of Being Newly Diagnosed with Multiple Sclerosis

There is an undeniable stage of grieving that happens after a diagnosis.

I had to mourn the confidence I once had in my health… and in my future.

I had to mourn the image I had of myself.

As a nutrition coach, yoga instructor, and personal trainer, being healthy wasn’t just a lifestyle, it was a part of who I was.

What did it mean for me, now that I had MS?

I started to question how much MS was going to change me – not just physically, but how much it would change who I was as a person.

Right?

You’re scared that MS is going to take over your body, your life and your identity.

You’re scared it’s going to change who you are as a person.

I know this is a heavy topic, we’re talking about today, and if you know me, I am the Queen of Silver Linings.

I am always looking for the positive in a situation.

This is far from my normal upbeat tone and personality.

But I have to keep it real with you.

Keeping it Real

Because when you’re diagnosed with MS, having someone just try to push you into the belief that “everything will be fine” doesn’t feel good.

I do believe that everything will be okay not just for me but for all of us – especially can we come together to support one another and lift each other up – but when someone tries to downplay how I’m feeling, I find myself resisting even stronger and the only thing that does is makes me try to prove my point even more about how bad things are.

I don’t want that for me… or for you.

So, I’m sharing this raw and honest message with you today, because I want you to finally feel seen and understood… maybe even for the first time since your diagnosis.

Give Yourself Permission

I want to help you give yourself permission to not be okay in this moment, to have the courage to acknowledge how you really feel, but also to know that you don’t have to get stuck in this mess either.

You can move forward.

Your life is not over because you have multiple sclerosis.

MS is a chapter in your story.

It is not the ending.

You get to decide where you go from here.

You get to decide the meaning that you give to your diagnosis.

MS doesn’t get to take away your identity – the heart of who you are – no diagnosis can do that.

Now I know that everyone is at a different place with MS – not just from a diagnosis standpoint – but from an acceptance as well.

So how we each address it will be different.

But today, I want to help you create that bridge from where you are today – exactly as you are – to a place of acceptance and genuine hope for the future.

The Emotions of Being Newly Diagnosed with MS

The first step to getting there is giving yourself the time and space to process your diagnosis and the emotional rollercoaster that came along with it.

But the reality is if we just try to keep “pushing through” without acknowledging our emotions, we’re only delaying the inevitable.

There’s a book titled, “Feelings buried alive never die” and I think that just is so profound.

I mean doesn’t that just hit you?

When we ignore our emotions we’re trying to just get them to go away.

To push them down so far that we never have to deal with them,

But the truth is ignored emotions resurface.

They always resurface.

And when they do, they resurface as resentment, procrastination and they build into anger and anxious thoughts and they can affect our relationships and our outlook on life.

They can literally change how we go through life.

So, to suggest that we can just ignore any emotions around this diagnosis just isn’t true.

You need space to process this diagnosis and starting having some self compassion for what you’ve gone through.

Again, this is not about being doom and gloom or having a pity party for yourself.

This is about keeping it real with ourselves.

This is about learning how to manage your emotions.

Why?

What’s the pay off?

Giving yourself permission to get out of the fear and be able to not only regain hope but to remind yourself that MS does not get to change who you are.

I need you to hear it not just in your head, but I want you to hear it in your heart.

MS is a chapter in your life.

It is not the ending.

You will figure this out.

MS does not need to be – nor does it get to be – your new identity.

You want your life back.

A life where you can make plans for your future… and make them with confidence.

You want a life that has purpose and meaning and contribution.

You can still have all of that.

We may need to make some adjustments along the way, but you have the ability to create the best case scenario for you.

And being part of this community here can help you get there.

Practical Ways to Manage Emotions

Let’s dive into some of the practical ways to start processing these emotions.

As I said, it will look different for each person.

Some of us are internal processors and others are external processors.

How do you like to process things?

Do you like quiet time by yourself?

Or do you find comfort in talking to someone?

Maybe it depends upon the situation.

That’s how it is for me.

Sometimes I just need a journal and a pen.

Other times, I want someone who will just listen. I’m not looking for advice, I just want them to be with me in the moment and help me to talk through everything that’s weighing on my mind.

And other times, I love a good counseling session. I want to just dump everything out there and have someone help me understand the deeper meaning – what am I really struggling with? Here’s what it looks like on the surface to me, but I know that’s just a facade. Help me understand what I’m actually struggling with.

They all have their place.

And I don’t know which one is the best fit for you today, but I want to share some ideas, to hopefully spark some inspiration for you.

It could be

  • Journaling
  • Going for a walk
  • Getting on your yoga mat
  • Listening to worship music

Getting outside to take some deep breaths and for the first time since your diagnosis allowing yourself to fully exhale. To let go. (Inhale… Exhale…) To breathe again.

Journaling

If you don’t know what to write, write the first thing that comes to mind. Just start getting words on a page – getting FEELINGS – on a page.

Because in time, this becomes so much more than just putting pen to paper.

Journaling offers a safe space to release those pent-up emotions.

Personally it helps me get the relentless thoughts out of my head.

Write down your fears, your hopes, and even the questions you’re not ready to say out loud yet.

Just get it out, my friend, get it out. It can feel so good.

And maybe you decide to burn it afterwards and never look at it again.

Or maybe you revisit them weeks, months or years later and see how far you’ve come!

It’s’ your practice you get to decide.

Going for a walk

There’s something so therapeutic about moving your body – especially in nature.

I’m a Jersey girl so my heart is fully free when I can talk a walk on the beach.

Walking on the sand, hearing the waves crash, smelling the salt air, that is my ultimate place of calm.

But I don’t live at the beach, so my day to day is just going around the block.

And the funny thing is most times, I have to psych myself up to do it.

I rarely am excited to go for a walk but I always feel better afterwards.

Going for a walk is a chance to escape, reflect, and even find a new perspective.

It almost feels like each step on your walk is another step forward in healing… in life… a reminder that life goes on.

And if you have days where walking isn’t possible, just sitting by the window can still connect you to nature.

Getting on your yoga mat

It’s funny as a yoga instructor so many people would come to class to address physical ailments – tight hamstrings, a bad back, tension in their neck and shoulders, but they always walked out with so much more.

Yoga is far more than physical stretches.

It connects the breath to movement, which is just healing in a way that is really hard to describe.

Yoga can help to calm the mind.

It’s your space. You. Your breath, Your mat.

I remember when I first started practicing yoga, I always felt good after class but it always surprised me that I actually started to feel more calm and relaxed between classes too.

That’s really what kept me going back.

Listening to music

Music has the power to heal and uplift.

What music speaks to your heart?

What music can you put on and it just feels like it’s speaking to your soul?

For me, it’s worship music.

It’s the music and the message that help me to process emotions.

But is it for you?

Can you…

  • Play some music when you’re eating dinner instead of watching TV?
  • Listen to music that relaxes you in the evening as you’re getting ready for bed?
  • Create a playlist that uplifts you when you’re down?

If music speaks to you – if music is healing to you – bring more of it into your daily life.

Breathing

Okay, let’s talk about breathing. The deep exhale kind of breathing. The breathing that helps you not just fill your lungs, but helps you declutter your mind. Living with a chronic illness like MS – we will have lots of ups and downs – and everything in between – so to have the breath – deep cleansing breaths – something that is always available to us – it is powerful. No matter how many times you think you’re getting off track or going down a rabbit hole of disaster – every moment is an opportunity to begin again. And it begins with a single breath. Let’s take one together now.

Each of these methods has its own magic.

And remember, it’s not about finding the “perfect” way to cope but discovering what resonates with you in the moment.

Because some days, you might need a walk, others days you find yourself pouring your emotions into your journal.

Whatever you choose, be gentle with yourself and have some fun with it.

Final Reminder

And always remember…

MS changes your life, but it doesn’t change who you are.

Your identity? It runs deeper than any diagnosis.

Your spirit, your character, your personality – they’re still yours.

I see a life of meaning, purpose and contribution ahead for you.

Let’s get there together.

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I'm Alene, your MS Sister.

When I was diagnosed with MS in 2016, I was scared and felt alone. But as a Nutrition Coach, I knew there was more to healing than what I was being told. I took action and within six months the lesions I had on my brain shrunk and went inactive. Now, seven years later there has been no new lesions and no new activity. As a nutritionist specializing in multiple sclerosis, I help women take back control of their future.

That’s my story, but I’m not alone. It's your turn to start Thriving with MS. I’m here to show you the way. 

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I’m Alene, nutritionist specializing in multiple sclerosis and your MS sister. I created this online haven to empower you to heal and inspire you to thrive with MS!

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