Big Heavy Feels: Grief & Neurodivergent Life
Updated: 7 days ago
As you scroll through this article, I invite you to tune into your body. Notice what sensations come up and, if you want to, jot them down.
Hope Edelman, author and grief coach, discussed her phases of grief in a recent episode of the Grief Out Loud podcast.
The context for these is the death of a loved one, but they can apply to other losses. We'll get to that in a minute.
Edelman's Three Phases of Grief
New Grief is the fresh sting of a recent loss. It can last for weeks up to a couple of years. It is the immediate anguish and all the firsts in the new reality.
Old Grief, or AfterGrief, is a response in the present related to a loss in the past. For example, holidays, anniversaries, or unexpectedly having a memory triggered. These are known as grief spikes and surges. I remember a few months after my mother died, I was living in Boston and riding the bus to work. An older woman sitting across from me had my mother's hands. I can't explain it, but it took my breath away. I did not take my eyes off of her hands the entire ride and then cried in the bathroom at the office. I was not expecting to grieve my mother so viscerally on my morning commute that day. That's how grief works – it pops up. These experiences are called grief spikes or surges.
New Old Grief is experiencing an old loss in a new way. It happens in a couple of ways, according to Edelman: Life milestone events (job loss, divorce, aging, rites of passage) - things you can’t grieve until the life circumstances come to pass. For example, I could not fully grieve the loss of my mother as a grandmother to my children until I had children over ten years later. For example, in the case of diagnosis, you may have grief come up as you age and experience the impact of declining hormones compounded by ADHD. Or if you were diagnosed as a kid and did well in high school, you may have grieved the difference again as challenges managing adult life presented later. Age correspondence events — when we reach the age our loved one was when they died when your child turns the age you were when your loved one died when your loved one's peers reach milestones your person did not get to experience. All of these bring up a new angle on the person and the loss that could not be accessed until it came to pass.
We also grieve over things every day that are unacknowledged.
Things we hide or cannot be easily seen by others, like health issues, diagnoses, relationship issues, losing trust in someone, miscarriages, jobs, achievements, aspirations, etc.
"Positive" major life milestones and transitions (eg. completing education, entering a new decade, marriage, parenthood). These experiences are often overwhelming and many experience some grief in them.
Material loss, like a home, form of transportation, access to services. Anything that impacts our physical needs or ways of living we've grown accustomed to.
These invisible losses present a catch 22. In order for an experience of grief to feel valid, the individual often needs external validation which is difficult to find if society doesn't have a frame of reference for it or has stigmatized it.
If we compare losses, then nobody will be allowed to grieve because there will always be something bigger or worse. We can be sensitive to those who experience a tragic loss and, in another time and place, hold space for our pain.
Folks who receive a later in life neurodivergent diagnosis (ADHD, Autism, Dyslexia, PTSD, OCD, etc.) often experience grief. Many of you have bravely shared parts of your story here.
After spending a lifetime feeling like something is wrong with you, it can be jarring to learn you are not simply riddled with character flaws. At the same time, acknowledging the ways we were not well cared for by the grown-ups can create a sense of betrayal.
It is painful and unfair, but we can't always say that out loud, which is also painful and unfair.
Diagnosis is layered with loss from the past, present, and future. It takes time to integrate the new lens into your life.
Eventually, it is possible to see a diagnosis, as one facet of who you are rather than the core of your identity. The tricky part is that is more likely to happen if you're processing with support.
Big grief feelings scare people
When you are more acutely aware of your feelings, as many neurodivergent people are, processing grief is especially challenging.
We may shrink ourselves in relationships to protect against criticism. This response to suffering is based on past harm we've witnessed or experienced.
Are we safe to experience our grief?
I learned at a young age that my reactions to stress and heartache were considered overly dramatic, attention-seeking, and embarrassing.
The power for my tears to make grown adults physically uncomfortable was not thrilling for me, it was confusing and scary. I needed someone to be in it with me.
Grieving can seem more intense and consuming than what we witness in others. Could our challenges with regulating a sensitive nervous system and our propensity for rumination contribute to our experiences of loss?
There is no one way to grieve. It is not a linear process. Every person responds uniquely to each experience of loss.
Grief is a universal experience that is always unpredictable and disruptive.
The endless variety of ways to grieve can be liberating. As an Enclave member shared, sometimes it's sharp and other times a more muted ache.
Many of us practice anticipating grief. Some of us latch onto intrusive thoughts and may make decisions based on fear. Perhaps you're more comfortable with anger than sadness - this is a common approach to mourning.
Mara Glatzel recently taught her Cycle community: we can honor our grief events by marking the calendar and expecting the energy drain.
Edelman shares grief rituals for those who want to observe a milestone of loss, but aren't sure how to.
The fear of being a burden to others keeps a lot of us from asking for or receiving support. We often feel like a burden when things are going well, so to increase our neediness by way of sorrow feels risky.
We are not meant to process loss by ourselves. We need the community to care for us and hold space for our heartache.
If you're in a season of sorrow, we want you to know you are not alone and this is a safe place to share your journey. We also honor that not everyone can or wants to share their grieving process, and that is okay, too.
Three Ways to Honor Grief
Be honest. If you don't know what to do or say, you can say that. Most of the time people just want to hear someone say, "This is awful. I'm here if you need someone to listen."
Be helpful. In the fresh grief, there are plenty of opportunities to extend tangible support to others. You can send a card, flowers, box of Jeni's ice cream, gift card, make a meal, offer to do laundry or care for pets or children, or even just run errands for them. If you're able, finding a specific way to help feels good to everyone.
If you're going to do something beyond meals, you may need to just notice a need and meet it or ask specifically if they'd like you to __pick up milk, drive them to the appointment, etc.__. Grieving people don't always know what they need and the emotional labor to think of something that feels like not asking too much usually results in them not asking for help.
Remember them. One of the things most appreciated in the After Grief is other people remembering your loss. A simple card or text message is enough to just nudge someone and continue to honor their pain in the future. If you're with someone who experienced a loss in the past and they mention it, don't panic and avoid it. You don't have to know what to say, you're holding what they share as a gift.
What did you notice in your body as you read this article?
What is your relationship to grief? How do you feel about it, in general?
What do you wish others knew about your grief responses?
The Basics of Grief by Psychology Today
"Bluebird" a poem by Charles Bukowski (YouTube, performed by the author)
Documentary: Speaking Grief (PBS)
Refuge in Grief: Support that Doesn't Suck - Megan Devine