What No One Tells You After a Diagnosis

What No One Tells You After a Diagnosis
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A multiple sclerosis diagnosis is hard to process. Our body that we once knew so well suddenly feels untrustworthy. The truth is that the malfunctioning of our body is a traumatic event. We never expected it to do these things. 

We are told this uncertainty regarding our body will last a lifetime. It’s easy to see why this would cause such internal panic. Often, no advice is given at the time of diagnosis about how to mentally handle the news. There are no words of encouragement stressing that things eventually will become more manageable. No notice of what to expect, other than, “You’ll have good days and bad days.” What does that mean anyway, when my condition fluctuates hour by hour much of the time?

We find ourselves sitting in a doctor’s office feeling like our entire world has come crashing down, with little or no hope for the future. 

Feelings of loss, confusion, frustration, anger, and sadness start to creep up, and at no point does anyone say the words I am about to tell you.

It is totally normal to feel this way.

It is entirely normal to feel those feelings. It’s OK if you feel confused, lost, or as if you don’t know who you are anymore. Experiencing the five stages of grief is normal in this situation, and everyone goes through it at a different speed. 

Some people seem to be able to whiz through these grief stages and move on quickly, while for others, these feelings may linger around much longer. 

Anyone who tells you to “move on” or “get over it” isn’t being helpful. We need to find acceptance at our own pace.

We’re given similar advice when we experience a loss in our lives, right? It’s normal to grieve and feel sad, angry, and frustrated about losing someone we love, we’re told. So why wouldn’t we be told the same thing after a diagnosis?

Our grieving process often centers around the person we once were. We may believe that the person who was once a great mom, an ambitious CEO, or a pro athlete is gone forever. 

The truth is, those parts of us aren’t gone at all. We’re still the same person we were, even if we feel slightly different and our body doesn’t work the same as it did. 

We go through different stages while we transition into the new version of ourselves, which is difficult in many ways. The critical thing to remember is that we can’t change the fact that we have a diagnosis of a chronic illness. We can only change how we respond to it. 

One of my favorite quotes, by Randy Pausch, is: “It’s not about the cards you’re dealt, but how you play the hand.” 

When we find ourselves feeling uncertain, or we start freaking out about how hard the future might be, all we can do is acknowledge it, bring our attention back to the present, and focus on what we can do today. It’s so easy to become wrapped up in everything we’re unable to do when we have chronic illnesses, so having that daily focus and celebration for what we can do today is crucial to maintaining our mental health. 

If you need some help finding “WINs,” we can help. Join in our “Wednesday WINs” post on Instagram, which is something we started in the ENabled Warriors Facebook group. It has helped many people, so we decided to share it with our Insta-tribe to spread positive vibes. (Find us at @DISabledtoENabled.)

If you are currently experiencing feelings of confusion, loss, or frustration, please know that it’s temporary and will pass in time. It doesn’t mean you’re broke, it’s your brain processing everything and trying to make sense of this new normal. 

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

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One comment

  1. Leanne Broughton says:

    Those 5 stages of grief still come and go, change with each new symptom even after 22 years. Acceptance waivers.

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