When I Experienced the 5 Stages of Grief After My Multiple Sclerosis Diagnosis

“I stare down at my hands, clasped in my lap with my fingers knit together. A black wave moves across my vision, blocking out everything but the neurologist’s impassive face as I hear myself ask, ‘Are you sure?’

There’s silence in the room, but in my own head, there is a loud rushing sound and I feel the blood drain from my face. The rushing sound becomes almost comforting as it fills the eerie silence that hangs in the air…an intense silence, a frightening silence, a pregnant silence.

He gives a curt nod, picks up his pen and jots down a few more notes before giving me a final, ‘Yes!’ He slightly adjusts his cloak of professionalism as he wraps it more tightly around his shoulders. Anything to remove him from something as basely human as tears of distress.

A single tear rolls slowly down my cheek and gently falls on my still-folded hands. Is that it? One sentence and suddenly I become a diagnosis filled with symptoms; a sentence delivered with the efficiency and tact of a shop assistant giving you your change.

‘Please make an appointment for three months from now so that we can begin treatment,’ he says dismissively.

The tears are now falling freely down my face. I feel numb. I stand up slowly, only but for the steadying arm of my hubby I don’t collapse into a heap of shock at the foot of the messenger.  

I walked mechanically out of the consulting room and back to the car park. It’s only once I’m sitting in the safety of the car that I begin to feel myself become unhinged. My hands come up and I bury my face in them just in time to hide my pitiful tears from my hubby who has yet to say anything. My whole body begins to shake and huge, heaving sobs ache in my throat.

Hubby folds me tightly in his arms and we sit like that for the best part of an hour. Totally lost, totally out of control and totally broken – both of us!”

That is the diary entry of the day I was diagnosed with multiple sclerosis – two days after my 36th birthday.  I went through the five stages of grieving in the months following that appointment. Grief for the person I was, grief for the life I thought was no longer possible and grief for what I thought was to become of me.  Denial and anger became my close companions for many weeks.

What had been just another day at work for the neurologist had been a life-changing day for me. A day when I was branded, the label “disabled” etched on my psyche. I felt cheated, my own body had turned on me and inflicted me with a permanent scar – and with lesions on my left lobe, with more nerve damage suspected on the spinal cord.

The final stage of grief is acceptance. It took me some time to get to this stage as I was processing my way through the other phases. I did dwell in denial and anger for many months, but I do feel that it was necessary that I allowed myself that time to adjust to my “status” change. It took me that long to realize that I was still the same person I was before I walked into the neurologist’s office that September morning. I still had 10 fingers and 10 toes, I still had a fabulous family, a roof over my head and food on the table.

There are still days that I refuse to “own” this diagnosis. Sometimes it feels like a bad dream and that I must be living someone else’s life; its been a pretty bitter pill to swallow and it had all but stopped me in my tracks for a while. There are still a few dark days, days that I mope around and feel sorry for myself and wail, “Why me!” despite all attempts to stay positive and motivated.

The only thing that had really changed was my perception of myself…and that could be fixed. I’m trying to own multiple sclerosis now, make it mine, but on my terms. I’ve come a long way since the original diagnosis in 2010, but this is a journey. There will be good days and there will be bad days. But through it all, I’ll be strong knowing that there are others out there fighting the good fight with me! I decided to get back up on that galloping horse of life and be strong. Why? Because I am strong enough!

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Gettyimage by: federicomarsicano