My pain may be invisible but I am not. I am a whole person aside from my pain who deserves to experience life.
1) I want doctors to understand: I want to have a quality of life to be able to function in enough capacity to live a decent life. And I fully expect them to assist me with proper pain management. I understand pain is complex and the treatment of it is likewise complex. I will do all in my capacity to follow their instructions and do what I need to, to manage the pain and reduce my suffering. If they are willing to assist me to do this.
2) I understand the invisibility: I get that people cannot see the pain. I have been called stoic so often it isn’t That amusing. It is simply a matter of this: with acute pain, there are some obvious behavioral pain indicators people are tuned to pick up and with chronic pain, we lose those. We lose those because we are in pain all the time. It is the name of the game for us. Those become redundant. However, we have a new set of pain indicators unique to us if you Know us. For example, I rub my neck with a migraine a lot. I shift position with Fibromyalgia pain frequently or begin to move slower. I wear tinted glasses inside and sunglasses and/or a hat outside because of the migraines. We have our tells. They are just different than the other ones.
3) I understand the confusion: We become less invisible during flares and severe pain levels. This is often when people think we are in pain. We try to explain we are always in pain. But they say we were functioning one day, and not the next. We were smiling one day, and then all pain faced the next. Pain has variability. And we ourselves have pain limits. We have baseline pain that is always there. We have pain we consider functional with. We have pain that is hard to function with. And we have pain we Cannot function with. Pain that is tolerable and pain that is intolerable. Just understand we ourselves cannot handle all levels of pain we experience. We cope the best we can, but there are limits to that.
4) Coping isn’t quite that easy: Frankly, I want people to understand coping with pain is extremely difficult and sometimes I do not cope well. It is an endless battle with no victory and I get tired. It is an unseen battle and it is exhausting frankly to live in a society that is not paced for the life I have to lead. Coping isn’t a linear event where you work your way to acceptance and just settle in for the ride. Life isn’t like that and neither is coping. We can get caught up in depression bouts. We can get angry and frustrated. We can even go back and start with denial all over again when we insist we can do something we want to achieve, even though we know we have limitations… then this leads to angry, frustration and depression when we ultimately realize we simply can’t. This is not to say we can’t overall be in a place of acceptance. It is just that life is complicated and so is coping. There are rough days and times. Pain is a demand on the senses and it demands attention. It demands a lot from us and this can be extremely taxing.
5) Facade: I want people to know I fake being well all the time. I mask the pain and I do it very, very well. Primary for the benefit of others. For employers, co-workers, and customers because at work you have to have your game face on. And for loved ones, so they do not see the extent of suffering. For my doctor, so I do not get stigmatized as a drug seeker, a chronic complainer or as exaggerating. In a sense, this does contribute to a sense of isolation and the fact that no one can see my pain, but it is the only way to function in society with chronic pain.
6) Depression complicates things: Depression from pain can occur due to the fact pain is difficult to cope with. Faced with an indeterminate lifespan of pain (decades and decades….) having already experienced decades it is easy to feel hopeless. High levels of pain can really cause deep depressive episodes in me and really dark thoughts. I see a pain psychologist for this and take medication as well because managing my moods is an important factor in managing my capacity to cope with the pain.