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Newly Diagnosed?  How To Begin The Narcolepsy Journey With Insight And Hope

I remember May 24th 2010 well. It was the day a doctor from India told me my 3-year old daughter had narcolepsy.

After 6 months of failed hospital visits and invasive tests to rule out a brain tumor, epilepsy, and-- wait for it--drug abuse, I felt incredibly relieved. That relief was was centered around the the thought "it could be worse. It could be so much worse." 

And yet at the same time the word narcolepsy had a gravity to it that would then take me years to process, as her mother and care-giver. To this day Mathilda, now 11, lives with the 24-hour symptoms of the condition.


When you've been battling disabling, unexplained symptoms for months, years even, finally getting a diagnosis can (ironically) give you a deep sense of calm. But often it is the calm before the storm. 

When Dr. Shah told me that Mathilda had a serious sleep disorder, my relief centered around the dark thoughts I had each night--that we might lose her. Really lose her. That whatever was going on inside her body and brain was fast tracking her to an early end. 

The relief that her diagnosis might ruin her life but not neccesarily shorten it, however, didn't last long. Then came the full onslaught of what I later came to identify as grief. 

Any new diagnosis, regardless of its name brings with it such life changing adjustments that your previous world may seem unrecognizable. My Dad told be back then, even before the diagnosis of narcolepsy, that we had a "new normal."  He too had a strong sense of the severity of Mathilda's symptoms--that she wasn't going to get better any time soon. She was never going to be the same vibrant, energetic and peaceful little girl that we knew.

Being diagnosed with a chronic illness can mean we lose our sense of self. With it comes a new identity but also a new opportunity to live abundantly.

Being diagnosed with a chronic illness can mean we lose our sense of self. With it comes a new identity but also a new opportunity to live abundantly.

I didn't like him saying that because I had not even begun to really process the now let alone what lay ahead. But, looking back, my Dad was right.

This new normal is something we all face when the realization that life will never be the same sets in. Mathilda was altered neurologically, emotionally and physically. And our family life had to adjust to those dramatic changes both as a unit and as individuals. 

Some years later, and it really was years, I realized I was already half way through a journey that would ultimately lead to acceptance. Acceptance of my child's condition and the new life we all had as a result of her diagnosis.

Just knowing where I was on the spectrum of grieving was in and of itself incredibly helpful. If you are the sort of person who finds having relevant information empowering, then understanding what's ahead for you and your family will be an asset. Rather than looking back, you will, in time, begin to wonder what's next. 

“The question is not how to get cured, but how to live.”  ― Joseph Conrad

“The question is not how to get cured, but how to live.” 
― Joseph Conrad

The 7 stages of grief have traditionally included the dimensions of loss as experienced by those who grieve the death of a loved one. More recently it is widely recognized that loss has many names. In our house we call it narcolepsy but for others it is autism, stroke, diabetes, spinal injury, ALS, MS, cancer, dementia, schizophrenia, epilepsy, congenital heart defect...

For the purpose of dealing with chronic illness, I can testify to the grieving process not least because in a way we did lose one daughter and gain another. Whilst I often remind Mathilda that narcolepsy is a part of her and not all of her, it is worth saying that she has been shaped by the condition just as others are by their diagnosis. 

It's also worth noting that everyone grieves differently. The journey is not a neat, step-by-step process. I myself bounced around various stages and got stuck on a few for months, years even, at various points.

Sometimes I even straddled more than one stage at time. It took a full 5 years before I was able to arrive wholeheartedly at the final stage--engaging life. 

Here then, are the 7 stages of grieving. Ask yourself where you are in the process:

The 7 stages of Grieving

1. Shock

This is your body's protection mechanism which protects you from being completely overwhelmed by the devastating news you have received. It's like brain fog which means you switch into survival mode. Many details of this stage are hard to recall. That season is all a blur.

You're just trying to get through each day.

2. Denial

In this phase some people deny the true meaning of their diagnosis. We are so deeply affected by the loss that we deny the reality, often pushing away feelings and emotions. We tell ourselves falsehoods. For me, that meant thinking Mathilda would get better even though I knew her narcolepsy was incurable. Getting stuck here may prevent the person from seeking appropriate treatment. 

3. Anger

Anger is a natural feeling when life does not go according to plan. 

Not naturally a person who is accustomed to feelings of fury, I was shocked at the extent to which I felt exasperated with the doctors that wanted to send us both to the psychiatric unit. I was angry at the systems that failed Mathilda, and at the British Governtment for allowing an untested vaccine loose on children. 

It's important to recognize that this is a potentially destructive phase and may have implications that lead us later to regret. 

4. Guilt

We naturally take care of our family and friends and their diagnosis feels like we have failed them in some way, because we didn't keep them safe.

Our internal dialogue goes like this: "If only hadn't..."

In my book Waking Mathilda, I talk about how I replayed the events surrounding the day I took her to have the H1N1 vaccine.

"If only I had driven to the park instead of the health center." I can't tell you how much time I spent stuck in this phase. 

5. Sorrow And Depression

Tidal waves of sadness permeate our lives in this phase. We get stuck in the immense sadness and loss which can quickly lead to clinical depression. Life loses its color and vibrancy. Nothing lifts us up and we have hard time thinking we will ever find joy again.

I strongly advise seeing your doctor preferably before this stage kicks in. Reflecting on positive aspects of your life is also important at this stage. Journaling gratitude, exercise and mediation have worked for me as well. 

6. Acceptance

Here, we begin to accept our new normal. Reality sets in and we feel ready to let go of the previous turmoil. 

We acknowledge life needs to move on and begin to seek genuine ways to accept the pain whilst letting of negative emotions. 

Our grief never totally disappears, but we make positive steps towards healing and looking forward. We make plans that we know will be sources of happiness and become brighter in our everyday outlook on life. 

This happened for me once Mathilda began treatment. Since then I have savored the simple rhythms of family life, every tiny triumph and not spent too much time looking ahead with worry. 

Mathilda aged 10 after living with narcolepsy for 7 years.

Mathilda aged 10 after living with narcolepsy for 7 years.

7. Engaging Life

In this final stage, we continue to heal and begin to realize that life moves forward.

People comment on how we are laughing again, and deep down there's a flicker of pleasure that steers us towards making tentative plans for the future.

Whilst our altered world view is irreversible, we deeply desire to grasp each moment and make strides towards improving the lives of others knowing we have done what we can to stabilize and accept our new normal.

Understanding these important stages in grieving as we begin to accept our diagnosis is key to embracing life again. It is possible to move gently through them, take our beautiful families with us and wake up to a world which will once again feel worth living. 


Healing takes courage, and we all have courage, even if we have to dig a little to find it.

--Tori Amos



 Narcolepsy In The Classroom--A Teacher's Perspective On Educating A CWN

Narcolepsy In The Classroom--A Teacher's Perspective On Educating A CWN

Investigative Journalist at Ghost Ship Media Reviews Waking Mathilda

Investigative Journalist at Ghost Ship Media Reviews Waking Mathilda