I have attained a certain level of acceptance. Acceptance I will always have pain. Acceptance that I deserve a life with it. Acceptance that life must be balanced, limited and paced. That I must take care of myself and do my self-care on bad days. And that I should always strive for more improvement. I gained a lot of this acceptance by having some actual effective treatment, because trust me it is hard to have acceptance without any actual pain management.
But there are things with invisible illnesses that impede our acceptance. Certainly did for me.
- Denial: Denial seems to rise up again years after diagnosis because we insist to ourselves we can do something that we simply cannot. We need a break. Or a compromise. Or something. But pushing through the pain… well that breaks US. But we are in denial. We Want it, whatever it is. Like a career of some sort. And we want to Hold Onto it. Without understanding Something has to change. The example of the career, the job may not have to change, but the pain management then Must change. If it does not, then the job has to change until the pain management does. Or we push through the pain and it gets worse and worse and we realize in the end we should have done something about that.
- Living in the glory days: Yeah the good old days when you could clean your house in one swoop and then go shopping. Man, that sounds positivity exhausting. Because it is. Because we are pacers. We somehow make ourselves guilty by saying but we Could do it Before. But the worst version of this is ‘ Could have been a…’ We made compromises for a reason. Yes we could have done things different, but we couldn’t at the time. That time is gone. We live the lives we have. Within our limits. And pacers are a great thing to be. Less stressful all around really.
- Should-ing: We should ourselves a lot. I should be able to do such and such according to these unrealistic standards I have set myself by what I think society thinks about me. But we should have standards based on realistic goals and then we feel great and accomplished when we finish them.
- Nay saying: No-ing ourselves out of a life. We are in pain, we are fatigued… last thing we want to do is, well, anything. We have limits and we should exceed them, but we have room for life in there. We can go out and do things as long as we are prepared, pace and watch our limits. Leave early if we have to. But go, be with the peoples. Not all the time, but just sometimes. Just a little bit.
I think all of those in their way impede our acceptance in some way. But we all do them every once in a while. I think the goal is to just get to a point where it isn’t often anymore. And to recognize we are doing it. Tell ourselves that is what we are doing.