Grief and Autoimmune Disease

I write a lot about autoimmune disease. The ups, the downs, the in-betweens. But this one is a heavy topic.


I’ve been thinking a lot about grief. I googled its definition, and everything I came across specified loss. I found that to be ironic, because here we are, having gained a diagnosis. Gained symptoms, gained complications. But the more I analyzed the concept of “loss”, I recognized its relevance. We have lost something, and oftentimes, many things.

devastated by illness

I like to write positive words, funny posts…Something to empower and inspire. But I have to be realistic too, and true to my own personal struggles. So here goes…

coffee and typing gif.gif

Sometimes I cry so hard I could throw up. I wrap my arms around myself and just rock back and forth so ritualistically that I can’t even feel the tears pouring off my cheeks and soaking into the carpet below. I sob and wail with anguish at the unfairness and response-less bargaining that I make with the universe, so weighted with despair that I do not and cannot move for hours, a permanent fixture on the floor of the bathroom. I think of all the things in my life that I will never get to do. I think of myself as a child with dreams of reaching career success as a marketing executive, as a busy mom who can juggle it all and then some, as a spontaneous and carefree traveller who soaks up life as it happens, and I feel grief for her. I feel grief for the loss of her dreams. I feel grief for the loss of the basic privilege of dreaming, uninhibited, about a future and its possibilities. I feel grief for her. She wants to be here, but the very real and very present limitations of disease are fighting her very existence.

finding place in world

Sometimes I get so mad that I want to punch through a wall. I cry violently, fingers turning white in squeezed fists. I sit in my parked car, slamming my palms into the steering wheel, squeezing my eyes shut, and screaming so viscerally that I sometimes surprise myself. I am enraged because the pain gets so intolerable that I am beside myself. I curse the universe for giving me the short end of the stick, for taking away my dreams, for ripping me backwards into pessimism, self-doubt and low self-worth. I disgust myself with self-loathing thoughts and am disappointed at a disease’s power over what I thought was a solid and tough psyche. I abhor myself for not always handling disease gracefully, for my straying from physical and emotional perfection.

In the darkness, it’s the worst. When my husband falls asleep, when all my friends and family are in a different time zone, when even my dog is snoring away, I feel so far from the rest of the world that it’s crushing. When I’m alone in the kitchen making dinner, I ask the universe when I’ll get cancer from this disease, and ask that it be at a time when my husband is not deployed and we are stationed near family. When the garage door closes and I sit in my car delaying entry into my home and life, I beg who or whatever decides everything that happens to give me a few solid years before debilitating pain and prohibitive complications set in. For the girl who, even in preschool, would run away to play on my own and have my quiet time, I am now shaking with anxiety at the prospect of being alone. When my husband says he is going to bed, my body flushes with dread and desperation. Soon it will be just me. Just me, the pain, and the things I can’t do. Keeping each other company until my distress exhausts my body enough or the sun comes up.

cant sleep gif.gif

It’s not always such crippling grief. Sometimes the weight drags me down, but I can still move about my day or week or month. In those times, I find blogs. I read forums. I search Facebook groups. I see these communities of millions of others silently mourning, ironically feeling completely alone. And it’s like I get pulled out by a rope, little by little, from my sorrowful pit. I read hundreds of posts of individuals crying over the same things, curious about the same symptoms, and bravely sharing their daily struggles and battle losses. Why don’t we recognize the power of each other? WE have the chance to save each other, WE are the rescuers of each other. Nobody gets it better than us. We need to recognize that we are never alone, and we are not always misunderstood.


Our dreams may be changed, hindered, or gone completely, but our ability to dream isn’t crushed. We have the neurologic ability to formulate images and concepts, so we can still possess hope and goals. Maybe it’s not to run a triathlon or to backpack Latin America, but to go a year in remission or for God’s sake, to finally remember to take that stupid new pill in your daily schedule. Just because our dreams are different doesn’t mean that they are any less than. It just means that they’re different. And in my good days, I cherish and feel gratitude for that perspective. How lucky we are to be stripped to the basics, the simple things, to find happiness and graciousness from them. To wake up and be able to rise from bed with minimal pain warrants a banquet thrown by the Queen of England. A doctor with the awareness and training to recognize and validate our symptoms is a gift from the universe. Other people aren’t unlucky enough to suffer the grief and the loss that we do so regularly for the rest of our lives, but they also aren’t lucky enough to experience the significance of joy of simplicity that we have found through this journey.

joy simple moments

We aren’t alone. We aren’t a lost cause. We aren’t worth any less. We have been hand selected to face one of the truest tests of resiliency. Pass the tests. And come on, people – we fight so hard for awareness and research and cures, and blab all over social media to fight our fight. We work too damn hard and too damn much to let the universe test us and watch us fall.

everything happen at once

What’s more, I heard a quotation recently that shook me to my core. “Grief is just love with no place to go.” But wait, we exist. We grieve because we have love and hope for ourselves and our abilities and dreams. How lucky we are to grieve a loved one that still exists within ourselves, but is simply clouded by misfortune and diagnoses.

Grieve, mourn, cry, scream, throw things. That’s okay, because grief is healthy and cathartic and psychologically responsive. We will never master grief, so we’ll bargain and weep and rage, but we are chosen to face this because we can handle it. Force that release to toughen you. Cry about something else next time – you have already cried over resigning from your job or experiencing the worst medication side effects. Turn the pain into your future. Feel it so deeply and so crushingly that your new dreams and your calling are born. We have so few truly precious and painless moments, and we need to spend them feeling empowered.

living despite it all

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