September is Pain Awareness Month and as such maybe we can spread some awareness of living with and coping with chronic pain.
To that, I would like to explain how to understand someone with chronic pain- the basic essentials.
How to understand someone with chronic pain
We didn’t ask for this
Never blame or shame someone with chronic pain. In no way are we responsible for having chronic pain or to blame for it. We did not ask for this. If you find yourself saying, ‘If you Only Did This…’ please stop yourself. Judgmental tones are not helpful and they feel like you are blaming us for not curing ourselves, which is impossible anyway. We didn’t cause this by doing something or not doing something. We are not going to cure ourselves with kale or drinking water. Pain management is complicated and if you want to hear about our pain management strategies then be ready for a long conversation… because trust me, we have one, and it is complex.
Coping doesn’t come easy
Coping is a continuous process. Acceptance is something we aim for and try to maintain but we struggle to keep that balance. Chronic pain is a constant assault and it demands a constant emotional and mental reaction. It is, frankly, draining as all hell. Sometimes we cope exceptionally well. Other days we just do not and we need a mental break. We are human. We have a full range of human emotions and there are days we are going to be frustrated, irritated, angry, sad… just like anyone going through a deeply difficult painful experience, except ours never ends. We have to utilize numerous strategies to cope as well as we do. However, consider the fact that this is chronic stress on us. Constant emotional turmoil we are adjusting and coping with. And then dealing with the variable pain signal itself which can be tolerable to intolerable. Moderate to severe. We are going to have bad days where coping with all this is very difficult.
Never expect one day to be the same as the next
Chronic pain is variable. It can be moderate and somewhat to the point we can function on some level one day. To severe and intolerable the next day. We have to pace all the time to try to prevent severe days being all the time. And so just because we did some mild housekeeping one day doesn’t mean we will be able to do a thing the next day. Just because we could socialize for a few hours one day doesn’t mean we will be able to the next time a plan or event comes along.
Pain isn’t the only symptom we experience
Chronic pain causes other symptoms. For example, we are damn drained all the time. Exhausted. Pain just takes a lot out of a person. Then there is the emotional toll- the emotional flux we have to deal with constantly. We often have trouble sleeping due to the pain (often referred to as Painsomnia) where the pain prevents sleep, which increases the painload the next day, which then impairs sleep… and a vicious cycle that is. We have problems with concentration because just tolerated the pain takes up Space in the head and so we cannot focus as well. This also means our short term memory and working memory are not awesome either.
We feel guilty and like a burden sometimes
Guilt is something that can be the plague of chronic pain. We feel guilty we cannot do all the things we once could. All the things others can. All the things society expects. All the things we think our loved ones expect. All the things We expect from Ourselves. So guilt can crop up. And there are times, man, when we feel like we are a burden to our loved ones because of our limitations. Especially if we cannot work and cannot do much around the house. Or if there is financial instability because we cannot work. We can feel equally horrible things like helpless, worthless, like a failure… the list goes on. Sometimes being reminded we Are Enough and we are worthy as a person is just important. That we are loved. That we are not a burden.
We are not lazy
We may no longer be able to work but that doesn’t take away our goals, ambitions and desires. It just means we have limits on our capacity to achieve them and may have to give up some of them. This is not an easy thing to do. We do try to replace them with other goals and desires. Things we Can do instead of Can’t. However, sometimes we cannot help but think about what we Can’t have. Things we Want to do but simply are not physically capable of doing. It is a very hard thing to accept. Just like giving up a career is an extremely hard thing to accept.
Appearances are not reality
We can Look fine and feel miserable. We can smile and laugh and be in pain. We excel at masking the pain because we learn to do this. We learn to function with a certain amount of pain and for the sake of living a life, to mask that pain. Never assume that pain ceases to exist. But we do not have to be miserable all the time either. Disabled doesn’t mean one Must be miserable All the Time. Yes, a smile masks pain. But we can be in a good mood and be in a certain level of pain. We can have a full range of human emotions just like everyone else. It is just Harder when the pain gets severe… then mood is hard to maintain. But if laughing helps us manage our mood and the pain a little… let us laugh. Just don’t assume the pain poofed out of existence.