Grieving for Your Old Life after an MS Diagnosis

Reading time | 9 mins

Date published | 23 November 2021

Dealing with grief is never easy - but what if you're grieving for yourself?

When she was diagnosed with multiple sclerosis, Barbara Stensland's life was turned on its head. It took two long years to piece her life back together - but she was determined not to take anything for granted.

Along the way, she noticed how frightened some people are when confronted with grief - their own or the suffering of others. Barbara found on her journey that grief is both natural and healing, and that more people need to talk about it.

Then, when the COVID-19 lockdown hit the UK, Barbara helped her son and her friends accept and embrace the grieving process.

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My transition into life with multiple sclerosis (MS) was short, sharp and brutal. I went to sleep one evening and woke up the next morning unable to walk or talk properly. Even though the actual diagnosis would take another 10 long months, I was immediately plunged into intense grief, the like of which I had never experienced.

Overnight, everything had changed beyond recognition. Suddenly I was grieving a life I'd now never have - one that I had meticulously planned out as a single, divorced parent of a child about to start high school. I lost my job, my health was declining rapidly, my studies were thrown into doubt, and my partner left. Which part of my life was I to grieve first? Was it possible to measure out our grief? A spoonful here and there for everything I'd lost?

It's not, of course. Grief is impossible to unpick or organise in an orderly fashion. It is all-encompassing; a dark shadow spread out over the long stretch of days that lie ahead. I felt trapped in stifling thoughts. My "fight or flight" responses were alight with a prickling sense of fear for what was to come.

Along with the dread was a bone-deep sense of loss for all that had passed. Had I appreciated my old life? Had I appreciated it enough?

Grieving for my world after my MS diagnosis

My world shrank rapidly as ill-health kept me at home. Things I once took for granted appeared lost forever. As I lay on the sofa yet again, the view from the window seemed to mock me. What once was a harmless part of my world was now a horrible reminder that life marches on. Thousands of people on the other side of the window still had their routines, hobbies, and health. I, on the other hand, felt unanchored and adrift.

Eventually, and with the support from many people, I put small pieces of my life back together and then the bigger ones. It took two years, and there were many more steps back than forwards, but I began to rebuild on a desolate landscape.

Related: Embracing Change with MS

Multiple sclerosis meant I no longer took anything for granted. I filled each day with as much as I could, even if that only involved lying on the sofa re-reading the same five pages of a book during a fatigue-filled day. After all, my mind was still free to roam. I could still make plans, and I was still the best friend and mother I could be. I was still here.

Family deaths and re-learning to grieve

Then, in 2019, my brother died. 18 months later, my mother followed him. In between those bookends of trauma, the pandemic started. Grieving for my brother had been horrendous, but the people gathered and mourning at his funeral made a heartbreakingly beautiful celebration of his life.

For my mother, any proper rites of grief were snatched away by COVID-19. Her funeral was a bleak, regimented and rushed affair. A wake was now against the law, and a heavily curtailed number of us listened to recorded songs in an empty chapel. We couldn't sing, as it was strictly forbidden.

After the flurry of calls and visits in the early days, we were soon left alone with a sense that we must carry on as quickly as possible and with little fuss.

But grief is still grief, and the path through it is hard.

Grieving is seen as an intensely private experience. No one mourns in the same way, and no one laments on the same timeline. "Leaving someone to grieve" is being respectful - or so we're told.

Respectful, perhaps, but to who? I wish we could all speak more openly about the one thing that's certain in life. I wish we didn't have to rush ourselves towards the last stage of "acceptance and hope". Just like with chronic illness, people still treat death like it happens to other people. We hope that if we ignore the bleakest universal issues, they'll turn on their tails and go away.

MS grief had prepared me for the pandemic in 2020

Even though I was terrified of what was unfolding before us all when the pandemic began, I had this very strange feeling. A sense - not of calm, exactly - but the recurring thought that I could handle it. After all, I had extensive experience of my own world shutting down. Of doors slamming shut and the outside world becoming inaccessible.

As the world plunged into collective grief and fear of the unknown, for the first time in my lifetime, all of us were in it together. For once, I was the one giving advice and sympathy to friends and loved ones. I knew the healing power of finding value and hope in the smallest of things. I knew that feeling honest gratitude was like sitting by a warm fire in winter. And, of course, I knew how much joy a call, text, or email could bring someone who's struggling alone.

MS had taught me a hard yet invaluable lesson about grief and trauma. As humans, we're pushed towards finding the bright side, even if pushing comes from cultural forces rather than ones within. In this rare case, the push came from within me - I'd found a way to use my experience with grief and trauma to soothe a slice of my world.

And, for a while, the world pushed to find the positives too. We could finally hear the birds. We marvelled at the empty roads free from sputtering, honking, traffic as we filled the gaps in our lives with baking, gardening and DIY. We self-soothed by reflecting on what we, as the human race, could control and what we could not.

Best of all, we shared. We talked about and grieved our losses together, online, in the media, and everywhere.

With the deaths of my brother and mother, my experience was naturally different to the group grief of the pandemic. But, without realising it at the time, I found myself drawing on the two years I'd spent grieving when diagnosed with MS.

I knew that beyond the initial shock and numbness lay a dark and lonely road. There's no way around it, only the need to rely on time and patience and self-kindness. Sure enough, once family and friends retreated and I was alone, the reality of permanent loss sank in, and darkness fell.

Treating grief as a journey, not as an obstacle

This time, I was more prepared. I practised a huge amount of self-care. I cried when I wanted to; I watched hours and hours of TV. I got some satisfaction that nobody - not even I - cared if I took any of it in. I couldn't move, huddled under a weighted blanket of sadness as the TV's light flickered on and on.

My routine was stripped back to the bare necessities. But, while the TV was my companion, I knew I had to eat well, get fresh air, and stay in touch with the people who meant the most to me.

More than anything, my instincts wanted to avoid the pain, but I knew that meant facing a roadblock of problems down the line. Confronting my grief was actually the kindest thing I could do for myself.

When we grieve, it's not only for the past and those we've lost. We grieve for our broken future with our loved ones and the now-impossible possibilities. We pick over last conversations and visits, sometimes wishing we could have done something differently. And we also grieve for our identities, even if we don't realise it. If you lose your last parent, are you still someone's child? We have to find our new place in a world without those people standing by us, ushering us on.

Our society needs to learn how to grieve

Our society is obsessed with happiness and "how to be happy". No matter what happens, it's become a moral duty to have smiles on our faces and breathe optimism.

The pandemic was a clear sign that we need to learn how to grieve. Life isn't simply a series of accumulations; there's a series of losses running neck-and-neck besides.

I remember watching as my son struggled during the first six months of the pandemic with compassion and sadness. University students were ordered to return home, and learning went online. All his holidays and festival plans were abruptly cancelled. Pubs, nightclubs and gyms slammed their doors. The structure his life revolved around had disappeared overnight, much like any routine I had before my MS diagnosis.

He also went through a grieving process of sorts. It was shorter but still dark and painful, and it was heartbreaking to see.

Then, one day, he told me about his plans to create a routine he could do from home. He found a job in a hospital, juggling it with his studies. He used my kettlebells in the living room, replacing his trips to the gym. He adapted and focused on the small things he could change and tried to come to terms with his grief for the things he could not.

Grief is born from love – we’ll find our way again

Grief and all its horrors are born from love. We know this - and we're told it before we really know it - but acknowledging it is very difficult. Whether you've lost a loved one, or an experience, identity, or way of life, recognising that love can let us re-shift our focus on what's important to us.

We will find our way. Much of life is spent hiding from grief and dodging pain when meeting both is inevitable. I do think hearts are in the right place when we discourage talking about grief. Logically, "wallowing" in unpleasant things will make them stick to us, and, as humans, we want to save ourselves and others from prolonging the experiences that hurt us.

But grief is a tunnel, not a pit. There is a way out as long as you don't stop or turn back. That's why talking about grief is so important. Would you rather walk through the tunnel alone or chatting and holding onto the hands of your friends?

NPS-IE-NP-00329 November 2021