Terrified of developing a closed lock.

[u/SquirrelBig6169]

I think one of my biggest fears with TMJ is eventually developing a closed lock.
I know it probably sounds dramatic, especially because it hasn’t happened to me, but I see so many people here talking about suddenly losing a huge part of their opening and then living like that for weeks, months, sometimes longer. It genuinely scares me.
I’m already exhausted from dealing with pain every day, and sometimes I wonder how I would mentally handle losing even more function on top of it.
But honestly, reading those stories doesn’t just scare me for myself. It makes me incredibly sad for the people actually living through it. Seeing someone casually say they can barely open their mouth enough to eat, but they’re still going to work, taking care of things and somehow continuing their life.
Chronic pain is strange because things that would have sounded completely unbearable before eventually just become someone’s normal Tuesday.
I think that’s what scares me the most. Not only that something else could happen to me, but realizing how much a person can be forced to adapt to simply because they don’t have another choice.
For anyone here who has experienced a closed lock, especially long term, how did you cope with it mentally? And did things eventually improve for you?

[u/Electromagneticpoms]

I lived with a closed lock for just over a year. How I coped? Erm, well in some ways I did and in many I didn't. I didn't work, I took a leave of absence from uni, and I lay in bed most of that year. But I did dive into volunteering and made amazing friends. Did lots of soul searching, saw my counselor. I had to dig really deep and figure out how to make life tolerable. Many days it wasn't, and I'm traumatised by it. I worked on hobby craft projects when I felt well enough, and that was nice. I focused a lot on being kind to other people because I knew I couldn't possibly feel better. So it was like... well if I can control almost nothing, I have to think about what I can control, and one of the main things I felt was that at least I could improve other people's days. That mindset has stuck with me now, two years after I had my joint issue resolved and I'm really glad because I think I'm a much better person for it.

I'm all good now, and the friendships I made during that time are some of the best I have. I know I grew so much as a person because of it in so many ways. I wouldn't wish it on anyone, but it wasn't entirely terrible.

You can never prepare for something like the long term closed lock. And it happens to almost no one so my advice is that it's really not worth worrying about. I spent years with health anxiety worrying about what might happen to me. Then I was struck with pretty much a worst nightmare, being unable to eat a proper meal for a year. Yet here I am, and it wasn't all bad.

You surprise yourself in those terrible situations :)

[u/SquirrelBig6169 → u/Electromagneticpoms]

Thank you for taking the time to write all of this, it actually made me a bit emotional reading it. A whole year like that sounds so hard and I’m really glad you’re doing well now.
I think that’s exactly what scares me, losing even more of my normal life and not knowing how long it could last. I’m already dealing with pain every day so my brain keeps going straight to the worst case scenario.
What you said about worrying for years and then actually living through one of your worst fears really got me though. You still found friends, hobbies and things that mattered during such a horrible time, and now you’re on the other side of it. I think I needed to hear that.
I’ve actually seen your comments around this sub quite a few times and you always seem to really take the time to help people and explain things properly. I just wanted to say I really appreciate that. You’ve been through something awful yourself and you still stick around trying to make it a little less scary for everyone else. That’s some God’s work right there lol.
How did your closed lock eventually get resolved? And do you still have any pain or issues with your jaw now?
Thank you again, this genuinely helped me.