I started thinking about this topic recently, about how there are certain things about living with chronic pain that those around us will never understand. That a healthy person just can’t (sometimes won’t) understand.
As I thought about what came to my own mind, I asked the question “What are the things about living in chronic pain that healthy people will just never understand?” on social media and got a variety of responses.
Things that those with chronic pain wish healthy people could understand
1 . Why I Don’t Take My Migraine Meds at the First Sign of a Migraine:
Why? Because I live constantly with the first sign. You just pray that it doesn’t advance to the point where you have to take something.
I had this conversation with my Psychologist and he didn’t get it. “Maybe you’d have fewer/less pain if you just took the meds at the first sign.”
That’s all well and good, but when you only have 6 pills a month and it’s a rare month when you only have that many full blown migraines, you learn to hoard the meds, to conserve, and to ask “Is this migraine Relpax worthy?”I'd love to just take something for this pain, too bad I'm all out. #relpaxworthy #spoonielife #migrainelife Click To Tweet
– Note – This applies to ALL chronic pain (not just migraine) sufferers that take any sort of prescription meds for their pain. Probably even moreso now with the new laws about pain meds.
Anyone who takes prescription meds for their pain never has enough meds to get them through the pain they live with.
We are always in pain, we just do the best we can to get through it. We don’t want to take the prescription pain meds for many reasons, but now that the gov has made it so difficult to get the meds filled, we really can’t take the meds when we need to.We are always in pain, we just do the best we can to get through it. #chronicpain #spoonielife #fibrolife Click To Tweet
2. We are Always in Pain:
Even those who live with us forget that we are always in pain. That when they ask how we are and we say “OK” that that’s about as good as it typically gets. There is always some level of pain, the best we can do is learn to focus on something else and not think about it.It's chronic pain, that means we are always in pain, no matter how it looks. #chronicpain #butyoudontlooksick #spoonielife Click To Tweet
3. We Aren’t Lazy.
We aren’t sitting in front of the TV or staring at twitter because we are lazy, or even bored. We are doing it because it’s all we can do, and the idea of doing nothing at all is kinda scary.
So, we do what little we can, we try to watch TV to take our mind off the pain, but mostly it’s mindless TV and we may as well be watching paint dry. We stare at twitter or Facebook in hopes of staying engaged, not because we are avoiding the mountains of housework, and certainly not because we don’t see it or feel bad for not doing it.
We have a chronic illness, that doesn't mean we are lazy. We are doing the best we can. Please don't judge. #chronicillness #spoonielife Click To Tweet
4. We live in a Constant State of Guilt.
We have a long list of things we feel like we “should” be doing. But, we know that in the end that the one thing that we need to do most is take care of ourselves, so that we can do the other things that we absolutely NEED to do.
We feel guilty for the way our illness affects our lives, for the way that it impacts others, and causes them to pick up the slack. We feel guilty for a myriad of things, and often for everything.I have chronic illness, and live in a perpetual state of guilt. Don't make it worse. #chronicillness #guilt #dontjudgeme Click To Tweet
5. That we really don’t want to talk about it all the time.
But, sometimes we can’t stop ourselves.
You try not talking about the thing that you live with 24/7, that keeps you up at night, that gets in the way of all your plans.
Heck, we’d rather make up a new excuse for why we had to cancel plans than to give you the same one yet again. So, if you think we talk about it a lot, think about how much we are keeping ourselves from talking about it.
6. We are not the person we want to be.
But, it’s not because we aren’t trying. There is much we want to do, and the way we often react is not really who we are, it is the pain speaking.
Please give us a break. Know that we are trying to be the best person we can be despite the pain. And, if we react to you in anger or another negative way, remember that it’s likely the pain talking.Chronic Illness keeps me from being the person I want to be, but know that I'm trying. Click To Tweet
— Julie Ryan (@drunkitty2000) September 5, 2014