When Your First Reaction to Your Diagnosis Is Feeling Numb
Join The Mighty’s Spoonie Life Hacks group to get tips for tackling everyday tasks from people living with chronic illnesses — or to share your own hacks!
I thought I was handling my diagnosis so well. For the first few weeks I didn’t feel much of anything. There were no tears, no anger — nothing. Looking back, I was in a fog those first weeks; the news still didn’t feel real, and I hadn’t yet accepted my new reality. My lack of emotion about my diagnosis fooled me into thinking that nothing was really wrong at all.
But then one day, nearly a month after my diagnosis of multiple sclerosis (MS), the fog of denial dissipated and depression took its place. My body shook with sobs and I was overcome with sadness, anger and a feeling of hopelessness. Suddenly it all seemed like more than I was prepared to handle. This wasn’t “nothing,” as I’d been trying to reassure myself. This was scary. Multiple sclerosis is not an illness you can battle and overcome; it’s a disease with no cure. I didn’t know what my future would look like, and that uncertainty was frightening.
In the following months, I felt like a dark cloud had settled over me. I’d wake up in the morning and for a split second I’d forget, but then reality would set in, and I’d be reminded I was no longer who I used to be. I was now someone with a chronic illness. My body didn’t feel the same anymore. I’d been dealing with pain and fatigue for years already, but my diagnosis was proof, I believed, that my body was failing me. My own immune system, which was supposed to keep me safe and healthy, had turned against me and was attacking my nervous system and causing irreparable damage.
At times everything felt hopeless. I wondered, what kind of mother and wife would I be with this disease? What would I be able to accomplish in my life? Would I be dependent on others, a burden on those I love? On my worst days, I struggled to get out of bed and hot tears soaked my pillow as I contemplated a life with this illness.
It was in these darkest moments I realized that what I was dealing with was grief. We often think of the stages of grief, as illustrated by Elisabeth Kübler-Ross, as being reserved for the pain we experience after the death of a loved one, but these stages can also apply when we’re navigating a life-changing diagnosis.
With a few words uttered by my neurologist: “You have MS,” my whole world changed. It was only natural that I would go through a period of grieving the life I used to have and the future I had imagined for myself. I couldn’t ignore my grief, wish it away or make it instantly disappear with positive thinking. The only option was to accept the grief and allow myself to feel all of the feelings that came along with it.
While still deep in my grief, I made the decision that I wouldn’t shame myself for having negative feelings, and I wouldn’t try to shove my anger and sadness below the surface, pretending it wasn’t there. I wouldn’t project a façade of happiness or gratefulness that I wasn’t yet able to feel. As a society we like to celebrate the stories of people who “didn’t let their illness hold them back,” or always had a smile on their face no matter the pain they endured, but I don’t believe we should be expected to hide our feelings or mask our pain for the comfort or inspiration of others. I wanted to give myself permission to feel all of it, to talk about it, to write about it, and to work through the messiness of it, rather than stifling it and letting it fester.
It’s now been four months since my diagnosis. In that time, I’ve visited and revisited nearly every stage of grief — denial, anger, bargaining, depression — many times. The final stage is acceptance. I’m beginning to accept the reality of my diagnosis, but I’m prepared to spend much more time working on fully accepting that my life will never be quite the same. I’m also prepared to cycle through each of the stages many times in the future. My disease comes with relapses and remissions, so as my symptoms and function worsen and recover, I can expect to circle through anger, depression and acceptance again and again.
I haven’t yet fully accepted my illness and the ways in which my life will change, but I’ve accepted I will feel a multitude of emotions around these changes, and every feeling that surfaces is valid. My days aren’t as dark as they used to be, and I know in time I can get to a place where I feel at peace with the ways that chronic illness will impact my life. If you’re grieving too, know you’re not alone and that all of your feelings, even the difficult ones, are valid.
Photo of contributor by Emilie Iggiotti