Basics: 60F, I live alone, and I have had chronic pain from several issues with increasing pain over the years to manage: rheumatoid arthritis, neuropathy in both feet and calves, and I've had 3 back operations (1 discectomy and two fusions, 2018: 360 L5-S1 and Feb this year TLIF T11-S1), and because of a fracture and collapse at T10 a couple of months ago during my recovery, I now face a revision surgery, extending the fusion into the upper thoracic spine because of proximal junctional kyphosis (PJK). Argh.
Dealing with the pain and isolation (or not)
I'm sure many of you on this sub have encountered similar situations and challenges. I read many of your stories to feel less alone about how difficult this journey can be.
The pain is sometimes unmanageable and the medical system does nothing at lightning speed. I don't have a consult for my fourth surgery until July 22nd I don't know how I'm going to make it until then. Because of the relative danger of operating on this area of my spine, I'm being referred to a specialist in this type of surgery and he's in demand.
I'd like to hear from others about the psychological impact of being in so much chronic, acute pain for an extended period of time while waiting and waiting and waiting for diagnosis and consultation and then another surgery with a very long recovery…with an uncertain outcome.
I'm also acutely aware that I'm always initiating conversations with friends and family. No one ever checks in on me -- even knowing the condition I'm in. From my perspective, I imagine if I died no one would even know. I'm not saying no one would care – but it's pretty self-evident folks would get over it and move on.
It's a real, but sorry state of affairs. And it's not that I'm living alone. Plenty of people live alone but people stay in contact with them. And some people have plenty of people and support around them but feel extremely alone anyway.
However, I also think there are other things that have nothing to do with me personally that are responsible for my isolation.
Compassion fatigue. When people talk to me I really have nothing positive to report about my life because it's deteriorating and spiraling out of my control. My health, despite all of the good work that I do to care for myself has resulted in nothing but further disability, deformation, and horrific chronic pain.
The fractured back means I rarely get out and all my energy is just to do simple tasks, buy a few groceries, and just survive. Right now I spend about 80% of my day in bed because the pain is so bad. Driving is particularly difficult because of the location of the fracture in my thoracic spine. The pain feels like my rib cage is in a vise wrapping all the way around me.
So, no one wants to hear about things that they can't do anything about -- they feel helpless and so they just drop out of contact because feel they can't contribute anything helpful.
And the other phenomenon, I think, is that in the recesses of almost everyone's minds is aversion to the terror that this kind of situation could happen to them - declining health, disability, and isolation. So you avoid the thing that scares you.
It's definitely a thing. But being aware of it, and knowing it, doesn't change the outcome on the person who is experiencing it. You are essentially "abandoned" by everyone you know.
Add that on top of just life in general. Everybody has their day-to-day lives that they attend to, often that includes taking care of other relatives or children or work, or enjoying vacations, gathering time with friends and family etc.
And distance really isn't the issue because many people experience what I have because they simply can't participate in so many social events, even if they live nearby because they are too broken or sick to do so and so you stop getting invited, called, etc.
So I'm not sure why people are surprised, with a significant sick, disabled, elderly population, there are many many people who don't feel they matter...
But it's probably time to start talk therapy to make it through this.
