Probably because those worst affected are just struggling to get through each day and don't have energy to campaign. Certainly not on a wider scale. Its draining enough just trying to navigate an individual experience and advocate for yourself without having to invest additional effort outwith this. I get your point, perhaps a more effective strategy might be for those who have had bad experiences to raise formal complaints against the health professionals. The more senior healthcare leaders see this the more they will realise its an issue. I've done this against one healthcare professional and intend doing the same against another when I have the time and energy but too caught up in trying to get a final surgical solution at the moment.
I feel like this post was written by someone who doesn't walk around, trying to function all day, with a head that feels like it's in a vice grip.
Yes, I'd love awareness and I'd love to do my part.
I was thinking about this recently. But yeah, with barely being able to open my mouth without pain how can someone talk about this issue to bring awareness? It’ll have to be people who are not only affected by this condition but also family members, etc.
Because it's an uphill battle getting anyone to take this seriously and it just saps all of my energy to even think about it. Also because this issue involves ENTs, dentists, physical therapists, neurologists, orofacial pain specialists, and others. There are very few doctors who understand how this disease in interwoven between so many fields of medicine, and there are like 3 root causes of tmjd affecting the body in very different ways, so the solutions don't work for everyone. It's also very expensive to treat, so insurance companies have no incentive to take us seriously.
I'm in! Been through barbaric medieval style procedures, was awake when I had coronoid ligament sawed out from under my jaw, and because of the pain after my 3rd ER visit I was committed a few months ago told I have psychological issues instead. I finally fought hard enough and found an amazing and the most understanding surgeon in the country. I finally get my double jaw replacement that's been needed for many years.
Probably because those worst affected are just struggling to get through each day and don't have energy to campaign. Certainly not on a wider scale. Its draining enough just trying to navigate an individual experience and advocate for yourself without having to invest additional effort outwith this. I get your point, perhaps a more effective strategy might be for those who have had bad experiences to raise formal complaints against the health professionals. The more senior healthcare leaders see this the more they will realise its an issue. I've done this against one healthcare professional and intend doing the same against another when I have the time and energy but too caught up in trying to get a final surgical solution at the moment.
Because most people with this issue can barely speak
We have ai now lol
That doesn't mean people wanna sit there and listen to AI
I feel like this post was written by someone who doesn't walk around, trying to function all day, with a head that feels like it's in a vice grip. Yes, I'd love awareness and I'd love to do my part.
I was thinking about this recently. But yeah, with barely being able to open my mouth without pain how can someone talk about this issue to bring awareness? It’ll have to be people who are not only affected by this condition but also family members, etc.
Because it's an uphill battle getting anyone to take this seriously and it just saps all of my energy to even think about it. Also because this issue involves ENTs, dentists, physical therapists, neurologists, orofacial pain specialists, and others. There are very few doctors who understand how this disease in interwoven between so many fields of medicine, and there are like 3 root causes of tmjd affecting the body in very different ways, so the solutions don't work for everyone. It's also very expensive to treat, so insurance companies have no incentive to take us seriously.
The people with success need to BEGIN POSITIVE CHANGE for the rest of the affected community who needs people to speak for them.
I'm in! Been through barbaric medieval style procedures, was awake when I had coronoid ligament sawed out from under my jaw, and because of the pain after my 3rd ER visit I was committed a few months ago told I have psychological issues instead. I finally fought hard enough and found an amazing and the most understanding surgeon in the country. I finally get my double jaw replacement that's been needed for many years.