JOY LIVES HERE. GRIEF LIVES HERE TOO!
- Jul 6
- 6 min read
July is here JOY MAGNETS! And even though the sun is shining and there’s Joy in my heart…it lives alongside my grief.
I am grieving the version of me who used to wake up, drink one cup of coffee, and get seven things done before noon. The one who could stay up until 2am editing and still get up and go for a 3 mile run at 9A. The badass who never had to schedule rest between commitments.
That version of me is not here right now, and I don’t know if she’ll ever be back.
Even still, I am building this organization, trying to grow a comedy career, maintain the relationships that matter, and honor a body that needs breaks more often than I’d care to admit.
Grief and joy are living together in my chest at the same time this July. And I want to talk about it, because I do not think I am the only Magnet doing this math.
THE LOSSES NOBODY LETS US NAME
The world reserves its permission to grieve for the losses it recognizes. Funerals. Divorces. Job losses. The big, obvious, categorical ones.
However, grief is a wide net and research has a name for what we are experiencing. It is called disenfranchised grief. Grief that is not openly acknowledged, not socially recognized, and not allowed to be mourned in public. A 2023 study in Health Communication interviewed people living with autoimmune rheumatic disease and chronic pain conditions and found we are grieving very specific things:
Physical independence we used to have
Relational connection we used to have
The image of the self we used to be
Trust in institutions and doctors
Family plans we can no longer make
Career dreams we thought we would still be running toward (this one hits hard for me)
The researchers gave that grief a phrase I have not stopped thinking about. They called it grieving "the death of possibility".
That is exactly what it is. And nobody sent a card to say thinking of you during your time of mourning.
The extra sting is what researchers call self-disenfranchisement. When we look at our own list of losses and tell ourselves we should not be grieving them, because we are not dying, because other people have it worse, because we should just be grateful. That is not humility. That is us doing to ourselves what the world has already done.
Today, I am calling it out so we can stop doing this to ourselves.
IT IS NOT A FUNERAL. IT IS AN ONGOING GOODBYE.
Autoimmune grief does not have an ending because our diagnosis does not have an ending. Researchers call this ambiguous loss. The person we are losing is still here. It's Us. Our own bodies. Memory. Identity. There is no funeral to close the chapter, because the chapter does not close. It just changes.
A recent systematic review of 43 studies on MS and identity found that autoimmune disease causes loss across MULTIPLE selves at once. Physical self. Working self. Family self. Social self. All of them shift after diagnosis. All of them ask us to grieve.
Another study on Long COVID (which counts as an autoimmune-adjacent chronic illness for many of us) captured this in one Magnet's confession of loss, she said: "I am just a shadow of who I used to be."
PAUSE! Read that again.
She was not being dramatic. She was naming something the research confirms is happening to millions of us right now. And she deserved to be heard.
SO WHAT DO WE GRIEVE?
Look at this month with me. Some of what we are grieving in July:
The friendships that quietly stopped inviting us cause we said no more times than yes
The events we skipped because the heat did not agree with our nervous system
The wardrobe that no longer fits the body we are in now
The energy that used to power our careers, our creativity, our dating lives
The plans we made in a body that has since changed and we now have to cancel them
You can add your own to that list. I bet you have at least three more.
None of it will show up on a sympathy card. Yet, all of it is real. All of it is valid.
JOY LIVES HERE. GRIEF LIVES HERE TOO.
Now here is the part I want you to hold with me.
Grieving what we lost does NOT cancel our right to Joy.
Joy and grief are not opposites. They are roommates. Living in the same body. Some days one is louder. Some days the other is. Some days they sit on the couch together and watch reruns of Living Single.
The Joy-forward practice is not "pretend we did not lose anything." The Joy-forward practice is: name the loss, honor the grief, and keep choosing Joy in the same body that is grieving.
Because that is the truth. We CAN do both. Both can be true, and often is.
HOW WE GIVE OURSELVES GRACE (WITH RECEIPTS)
Real talk time. The research is loud on this one. A 2024 meta-analysis of 51 studies found that self-compassion is significantly linked to lower psychological distress in people with chronic illness, with the largest effects in neurological conditions. Not a small effect. Not a maybe. A statistical bear hug.
Another systematic review found that self-compassion interventions increased self-compassion, decreased depression, and improved outcomes across seven different chronic conditions. A separate review found self-compassion was inversely associated with anxiety and depression across chronic illness populations, moderated by shame.
Translation: giving ourselves grace is not a nice idea. It is medicine.
Here are four practices I am personally using this month. Not because they are cute. Because the research says they work AND I need them.
1. NAME THE LOSS OUT LOUD.
The disenfranchised grief research is clear. What heals it is being witnessed. Say the loss out loud to one person who will not flinch, or write it in a journal, or record a voice memo to yourself. The unnamed loss is what stays stuck. The named loss can move.
I said mine at the top of this post. Yours is next.
2. ONE HONEST WITNESS.
Do not tell the group chat. Do not post it on the gram. Pick ONE person who gets it. Tell them: "I am grieving X" Let them hold it with you. Let them not fix it. Let them just say "yes, I see that."
If nobody in your life fits that role right now, email me or DM me; my inbox is always open to Magnets. wellness@msingaround.org or @ms_ingaround on IG… and I mean it.
3. GRACE ON PURPOSE.
Self-compassion in the research is not vibes. It has three parts: self-kindness (talk to yourself the way you talk to a friend), common humanity (remember you are not the only one going through this), and mindfulness (notice the pain without adding a story about how you are failing). Practice one this week. Not all three. Just one.
The one I am practicing this month is common humanity. Every time I catch myself thinking "why can't I just push through like I used to," I remind myself: MILLIONS of Magnets are having this exact thought right now. Which is what sparked this blog.
4. LET JOY BE UNRELATED TO PROGRESS.
The old me was addicted to Joy through achievement. Get the thing done, feel the Joy. Perform, get the laugh, feel the Joy. Post the post, get the likes, feel the Joy.
This year I am practicing Joy that is not tied to producing anything. A slow morning. A conversation with my mom that goes nowhere. A song that made 16-year-old me feel invincible.
Joy without a receipt. Joy without a purpose, yet on purpose. Joy just because.
ONE MORE THING, MAGNET.
If you are here, reading this, you are already doing the work. You are already someone who takes their own grief seriously enough to look for the tools.
I love you for that. Truly. This is the part some Magnets never do, get curious enough to find real solutions.
This is not a finish line. Nobody graduates from being an autoimmune warrior. No one gets the purple heart award. But we do get to keep choosing the practice. Grief and Joy, living in the same body. Both real. Both allowed.
I am doing it with you.
WHAT ARE YOU GRIEVING RIGHT NOW?
Tell me, Magnet. What is on your list this month? What loss have you been carrying that nobody has let you name?
Reply, comment, DM me at @ms_ingaround or on Facebook at @aphilosophyofjoy.
You can also come sit with me on my personal Substack, (A) Philosophy of Joy, where I do more of this out loud. Meandering. Personal. Real.
Whatever you are carrying, Magnet... put it down for one minute this week. Then pick up something Joyful in the same hand.
We can hold both. Both can be true.
With Joy always, (Kellye)
MS-ing Around! 🌻✨
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