The MS Grieving Process: Denial and Isolation

This week Willeke van Eeckhoutte delves into the universal experience of grieving after being diagnosed with multiple sclerosis. From the ever-popular denial to the stories we tell ourselves and to being present in your daily life, read on to discover how she found her way forward….  

Nothing is as numbing to the soul as being diagnosed with an incurable illness like MS. When that illness is also progressive and affects your brain, spinal cord and optic nerves, you can safely call it a double whammy...and a bit!

In 2002 I moved to Ireland, the country of my dreams. At work, strong friendships were formed from the get-go and family members visited regularly. I was also studying for a degree in Psychology and when I had time to spare, I travelled around Ireland during weekends and holidays. Life was hectic and good.

Fast-forward to 2005. Five months after experiencing my first MS symptoms, I stepped into A&E with excruciating facial pain and fatigue. These symptoms invariably marred my days- there was no number a pain severity scale. My diagnosis followed soon after... it still feels as if it happened yesterday. I remember what I wore, what I said, what I forgot to ask... as well as staring in my neurologist’s eyes looking for reassurance. I also remember standing in the hallway outside the MS clinic, texting everyone, saying “I am OK! It’s MS but I am OK!” 

Denial had arrived.

“The illness is mine, but the tragedy is theirs.” Third Star, 2010

Denial set in almost instantly. The visceral impact I thought would happen during the MS clinic, didn’t. When my neurologist said I would have to change my lifestyle, I thought, “What an odd thing to say to someone who just changed her lifestyle when I moved to Ireland.” 

“No can do!” I said afterwards to the friend who went to the hospital with me—and who I conveniently forgot to take into the consultation room with me. She later dragged me off to a fancy restaurant because in her own words, “I was so in denial!” 

Not facing up to the truth as a coping mechanism prevented me from going off the rails that day, so much so I was talking about the ‘D-thing’ in quite a matter-of-fact way. Family and friends were asking if I was OK as the lack of tears puzzled them. I asked them in return if they were OK because they seemed to make so much more of the diagnosis than I was. 

When I eventually went to bed that night, my thoughts were fragmented and skewed. I was happier knowing what was causing the maddening facial pain and relentless fatigue rather than being sad about the difficult journey ahead of me. I didn’t see the need to quit my job nor the urgency to throw my life around again. This was a stance I eventually had to review 4.5 years post-diagnosis.

This was diagnosis-denial 1-on-1

For about five weeks, I said “I’m fine!” Non-acceptance would intervene when new symptoms arrived and trigeminal neuralgia went up a notch. It stopped me from thinking about all the implications of such a harsh diagnosis. 

Before denial dissipated, I still had a litany of questions that required answers I couldn’t find. 

  • I could be forgiven for not being even remotely aware that my body was in a slow process of relinquishing power and control? 
  • Did those glimmering lesions on my brain show up one day fully formed? 
  • Why, after just 2.5 years, did MS have to attack the life I had dreamt of? 
  • Please don’t tell me family and friends will walk out of my life because I’m “just not the same anymore”?
  • Have I just lost the best part about myself?

All the above went unanswered because the time and effort spent on finding the right answers by being negative were more energy-sapping than being positive was. 

Interferon side effects helped drip-feed reality into my consciousness. Its numbing effect lost its potency, but I finally understood that being in denial is the opposite of having hope. Hope was where I was headed and hope is where I live to this day. 

Check out Willeke’s blog Ireland, MS and Me