I have had chronic pain officially for 23 years but I was complaining about pain since around 8 years old- before I even remember it really. I became to have memories of it around 12. You know, feeling drained by it and having troubles sleeping because of it. That sort of thing. It just means most of my life I have dealt with some level of chronic pain, even if it was less than it is now or even less than when I was diagnosed. It was a presence that affected my life and life choices. I remember learning, via every summer job I tried, that I would only ever be capable of a desk job. And I was fine with that but it is a limitation- when you one day learn that you are fully disabled and if you want to try to work again very few jobs are actually available to you. It’s just limits. We have to deal with that.
You never think when you are younger you will become disabled. That you will along the way have to make so very many compromises for your health along the way. And that any career you try and fit into will punish you for not being healthy in some subtle ways and some obvious ways. It is a all a harsh and hard lesson we learn. And why it is so damn hard to give up work- we tried our damnedest to hold onto that and sacrificed so much to keep it.
We know the value of working mentally and emotionally… and we know how it can destroy you mentally and emotionally. It goes both ways depending on the job and your health and if you become ‘a problem’. It can build your self-worth or just trash it. But I am not talking about just work well-being… because that is a sucky story for me… and some of us manage it within our limits. Some of us manage it because we Have To despite out limits. Some of us found the exact right compromises and make it work. And some of us just got too chronically ill and couldn’t keep up with anything, even part-time, and were forced to become disabled. Everyone’s tale there is different.
There are some things I can tell you about chronic pain though
- You actually never get used to it. Since it is a constant pain stimulus we experience we have to constantly cope with the fallout of that. You can’t get ‘used to it’. Now we do deal with a crapton of our baseline pain, what we call ‘tolerable’ pain which is a level far above what a healthy person would endure, daily, without a fuss. We do build up a certain…pain tolerance to a certain level of pain. But that isn’t what I mean. I mean the fact it Never Ends. I mean the days it severe and nails you down. And every single day you do all the things you do to cope with it… and sometimes that isn’t enough.
- We are only human. You can’t expect us to smile and laugh it off and BE POSITIVE all the time in the face of the tsunami of pain every day. If you except us to just suck it up, smile for the people, hide it, and be all silent about it… then you are sort of part of the problem. Because we are human beings with a Full Range of human emotions. And sometimes this pain experience makes us sad or angry, or irritated or frustrated. And we are permitted to have those emotions. We hide behind a facade 99% of the time so don’t complain to us about the 1% of the time we choose to express how much pain we are in and are actually honest about it, to some fraction. (See Facade for all the many reasons we mask our pain).
- It is not a weakness to express emotion. If we express how much pain we are in or the toll it is having in No Way is this a weakness. Hiding emotions is always perceived as strength by society for some effed up reason. Screw that. If everyone else can have emotions… so can we. So You Suck It Up, and deal with that universal fact.
- Because we cannot function or be what we believe we should be, what our family believes we should be, what our friends believe we should be, or what society believes we should be… or all of those for some people… we Often feel guilty for what we cannot do and a burden to others. Very often we do not just Let Ourselves Be within our limits and accept what we can do and not focus on what we cannot. Eventually over time we will accept this, but it can take a very long time if others are telling us how much we suck.
- Ironically, we know more about coping strategies and well-being than the average healthy person. Because we must to endure. And from that we have incredible resiliency that is very hard earned. People think we are lazy and do nothing when in fact we do so very many things to Maintain our well-being to Exist as we do with a level of pain they cannot even comprehend.
- We often do not need advice. Often we just want to be heard. I know it is hard to know what to say when someone expresses suffering but sometimes you don’t need to say much at all but to tell them you understand they are suffering and that you understand it is difficult to cope with but that you do not understand how difficult. It is fine to just listen to us when we are having a hard time. Sometimes that is all we need.
- People never see us at our worst because that is behind closed doors. So there is always this assumption we are not in as much pain as we actually are. Partially because we hide it so exceptionally well and partially because when it is too severe to tolerate, even for us, we are Not around People. It makes it very invisible.
- I’m sorry if I can’t remember your name. Or face. Or that thing we had planned. Or how to get somewhere. Or what I was literally just saying. Or what you were just saying. 75% of my brain’s capacity it taken up tolerating pain and that sort of means my focus, concentration, and memory really, really sucks.
- I am sorry when you make a plan I am often ‘I might’ or ‘It is possible I can come’ but I do not know how I will feel then or if it will even be possible. Plans are very hard to set in stone. I need flexibility. Or I will end up cancelling plans and no one likes that.
- We need recovery days from activity. And I doubt most people are aware of this. They see us do a thing and think ‘Hey, they can do things! They must not be in pain!’ but there is a Price for that. And that price can be hours to weeks of recovery depending on the activity. We choose to do things and choose to pay that price, if we know we can have the recovery time. And just because we did it one day, the pain level may vary the next time, and it is Not even Possible then.
- Some days I am just really tired. Really, really tired. Mentally, emotionally and physically.
- It is extremely rare for me to sleep Well with pain. To Get to sleep and to Stay asleep. Of course, lack of sleep makes pain worse… and it is a vicious cycle.
I could go on and on. Point is chronic pain is a mental, emotional and physical experience that just never actually ends. And if you think that is easy to cope with, there is something seriously wrong with you. It obviously has a toll on us. It obviously has an impact on us. The higher the pain the higher the toll and impact. And the more coping strategies we need to try and deal with this never-ending experience. As you can imagine, or maybe not, we deal with chronic stress due to this and we Also have to have coping strategies to deal with That or our health can get worse because chronic stress is rather not good on the body.