I think some doctors could learn a great deal by listening to their patients from time to time. Having a conversation maybe. Maybe then they might grasp how people feel when they have chronic pain. Instead we get studies as done in the Health Services and Delivery Research journal posting such results as this:
- patients struggling with the fundamental relationship with their body, and a sense that it is no longer “the real me.”
- a loss of certainty for the future, and being constantly aware of the restrictions of their body.
- feeling lost in the health care system; feeling as though there is no answer to their pain.
- finding it impossible to “prove” their pain; “if I appear ‘too sick’ or ‘not sick enough’ then no one will believe me.”
1) I know I went through this and I am sure many people do in some fashion or another. It is a sort of coping mechanism I suspect. I viewed it is a sort of Dualism. My body, physically, let me down and would continue to do so because it represented a limitation on all my possibilities. Sure it was still me, but the real me, that was my mind. My personality and my capacity to think… my ‘I think therefore I am’. It wouldn’t fail me or change. In some ways I was very wrong about that one given when you add FM cognitive dysfunction, fibrofog, migraine neurological issues, and migraine brain fog into a big package you really cannot predict brain function. And there are times ‘I’ am very much not present and accounted for. However, partly it is very true. I can do that Myers-Briggs personality test year after year and every time I will come up with an INTP type… so that is consistently Me. However, if we are our memories, then I am a hazy me at best. There is this sense that pain ‘dampens who I am’ such that the more pain there is, the less me there is. That is certainly true. But in the beginning I say it as a very dualistic thing… body this limited part of me I could not depend on and the mental me the part of me I could depend on. Eventually this falls apart and you see it is all interconnected mind-body connected entity. Yet, part of you never fails to talk about your illness as something Other than you, when clearly it is been a part of you so long hard to separate the two and really when you are talking about a chronic illness it is something that will be a part of you to some degree or another forever.
2) Of course we lose our certainty for the future. We are aware on the drop of a dime things could get worse, which then can drastically affect our circumstances. That rather makes you think a little differently about the future. And we are constantly aware of pain, which limits our movements and is, yes, a restriction on our body. Modifies our lives. Our plans. Our possibilities. We have to make sure we adapt to circumstances. And we are aware no one else has to plan things to that extent or has those limitations or is aware of every body part at every moment of every day.
3) Really? We are lost in the health care system. Because the health care system has no answers to chronic pain. Hell, they only have basic training on pain. Such basic training they have no clue what to do about it, how to handle it or what even to do with patients who have it. Or even where to send them. And that is where stigma is born. And we know all about stigma. And we actually have been told there is no answers for our pain… so not so much as a feeling as a fact.
4) This should be really obvious if anyone cared to think about it for more than a minute. Pain can only be really ‘seen’ if someone is crying, screaming or bleeding profusely. If there is no behavioral indicator it can, and often is doubted to some extent. I feel it, you don’t. How can you know what I am feeling? You have to dig a bit deeper. But you have only a minimal amount of training and maybe don’t even care that much or possibly think I’m depressed. But let’s assume you do care and there is no stigma involved. So you point to a chart and say on a scale of 1 to 10, 10 being the most amount of pain you have ever experienced what sort of pain are you feeling right now? And knowing my relative pain scale I say 6, which for any normal person would be at least a 9. We are assuming in this scenario I don’t have a migraine of course. What is the problem here? First of all, 6 doesn’t sound like much. Certainly not anything I could not tolerate, right? At least not on my chronic pain relativity of tolerating pain anyway. The main problem is that pain is relative. And having chronic pain skews that pain chart a vast amount. I tolerate pain all the time. I am expected to Function in more pain than most people could ever be willing to tolerate. That rather skews it. But tolerance is just a learned behavior. The ability to Have pain and Not show it, Not that I don’t Have it and am not Suffering. We fear if we say ‘how much pain are you in’ and answer ‘8’ all the time… no one will believe us, even though that actually is the answer. We have just learned that people expect us to endure that. Ironically if we endure that with a smile, we fear that no one will believe we have pain at all. And unfortunately Both are actually true. People will not believe you if you express your true level of pain all the time, because how can you be in that much pain All the time? And people will certainly not believe you have any real pain if you actually learn to function in any capacity and have the audacity to smile through it. No one can be in pain and smile. And if you have the further audacity to be depressed and be in pain, then actually you must just be depressed and not be in pain at all. We know there is no winning with the pain game and stigma. We know pain is subjective and trying to express it, through the stigma is insanely hard. We are told to function, and punished for it. We are taught to mask the pain, then doubted we have pain at all when we do it so well. We break down, clearly we are depressed. You also don’t want to complain, or make a fuss, or appear to be a drug-seeker or ignite any other possible red flag that doctor may have.
Ask anyone with chronic pain… and they will say what a damned obvious study. But maybe we need some damned obvious studies, right? So they can grasp a little obvious. Maybe teach a little obvious to those new doctors.