Hi there @dabbs, and all -
Great conversation, David - this is a topic I've lived through, and like yourself and @sueinmn - with work, I have come out on the other side.
I'm passionate about this topic so I'll try not to go on and on but make no promises. 😉

I had the benefit of being helped at Mayo's Pain Rehabilitation Center. Here is a patients account of the program. It gives a whole perspective on how much is tackled in the program to help the whole person:
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https://patient.practicalpainmanagement.com/resources/pain-self-management/time-mayo-clinic-pain-rehabilitation-center
We are complex humans and we need a complex approach. We weren't wired to immediately know how to deal with change, disaster, "invisible disabilities" and know how to rebuild from them. Sometimes we have to learn, like kids, and we have to parent ourselves in order to be open- minded and possibly re-learn what we thought we already knew. Once faced with permanent physical changes, emotions and behaviors begin to change from fear, anxiety, anger, depression - all common sense goes out the window and that's ok, for a little while anyway. We have remember to give ourselves grace along the way because it's a challenge.

It's easy to feel slighted because no one can see our "invisible" disability and how we suffer... I was there in my B-Life and it was an ugly, draining place to be, and I knew better. I knew it was a "ME problem", no one else's, and I was only hurting myself by being in that negative space - I just did not know how to get out of it, there was no map, no directions.

Figuring out a plan is the next challenge. How do I help myself? Might it be a rehabilitation center, day programs, cognitive behavioral therapists, social worker, self-help apps, PT and exercise programs, dieticians, bio-feedback, group therapy? There are endless resources out there. Where do you start? One step at a time. Little things like David mentions, helping others, giving back, volunteering, but we can't forget to help ourselves first. We can't run the car on an empty tank with faulty wires and no oil.

I'm grateful that I worked hard and willed myself to go to the 3 week pain rehab program at Mayo. Here's what I learned and I hope it's helpful -

A-Life: could do anything and everything, overachieve, control, leader

B-Life: confusing, painful, anger, loss, grief, limitations, anti-social

C-Life: stable, moderate, flexible - with work and acceptance, joy, freeing

If you chose to become an "active participant" in self-care and work on finding acceptance to live your C-Life, you can move past not caring about who can or can't see your invisible disability. You can grieve your losses, and move on, You can find forgiveness of doctors or circumstances out of your control that you can't change, and move on. You can forgive yourself, and move on. Holding ourselves captive only hurts us more. Freeing our minds allows healing and less stress for our bodies and symptoms. Acceptance does not come on it's own nor does it come easily, but it can come - it's up to each individual to self-advocate, problem solve and strategize. It was hard work getting to a C-Life and has gotten easier over time, but living with chronic conditions requires constant work and lifestyle change.

A-Life was incredible and I miss it, but it's never coming back
B-Life was hell - embarrassing, draining, and I never want to go back
C-Life is stable, moderate and flexible - I understand that life has been re-shaped and is still worth living

Dang it all - I did it again, I went on and on! Hopefully someone finds value in what I shared. There is hope, there is joy. The glass can be half full, not empty, but you have to get after it. Reshaping mindset is a good place to start.

Today, I find distraction by helping others. I used moderation and typed this post in increments to avoid a push/crash. Time to rest now. I gladly welcome feedback and ideas of what has helped you overcome and move on. Stronger together, right?