- B. Nintzel
10 Lessons About Living With Chronic Pain and/or Illness
We judge the world based on our own experiences. My experiences in life have been filled primarily with a ton of physical pain. It’s so normalized to me that I sometimes don’t even register it, yet alone pay attention to it at all. My assumption, and how I’ve walked through life, is that everyone’s life is like this — physically painful.
I’m not talking about normal aches and pains, I’m talking about chronic pain. Chronic pain is obviously very personal and very different for each person, but at some point it transfers and bleeds over into every part of your body and every part of your life.
You know when you have the flu, like really, truly have the flu and your body aches and hurts and every movement is excruciating and exhausting but you have to take care of yourself so you do it anyways?
That’s kind of like the framework for someone living with chronic pain. It starts somewhere (point zero) and then radiates to every part of your body; your entire body becomes exhausted from having to fight off pain. It affects your mental acumen, it affects your social life.
The thing about my spine disease before was that I had thirteen years to get used to it.
Now that it’s back, I’ve had a little less than a year to get used to that same amount of pain, possibly even more. I deteriorated in a year as opposed to thirteen.
It isn’t enough time to physically become accustomed to the amount of pain I have. The only thing that has been helpful is my memory — I remember what it’s like, because it wasn’t that long ago. I remember what I need to do for myself, the mental space I have to be in that allows me to accept what is happening. It becomes a second language, everything you have to do for yourself — self preservation. This is my normal — that self preservation that allows me to disassociate from my own life and pretend that everything is okay. That I’m okay. That this is normal. Everyone has this amount of pain, right?
I don’t know if I could appreciate the lessons I was subconsciously learning during the first thirteen years of my spine disease. It has taken a five year “remission period” full of struggling through the system of poverty and chronic health problems and now the return of the disc disease and the impending surgery to fully have these lessons sink in.
Here are a few things that have bubbled to the surface of my brain:
1. People have a hard time relating to invisible illness.
I’m talking about chronic pain and mental illness. In general, the public seems to be okay with it if there’s been an accident. Which sounds truly shitty to say, but then there’s a reason, and that’s what people seem to hold on to. “But why did it happen?” However, when someone just lives with it, it’s been a part of them for no reason (re: no accident) people can’t seem to fathom why you feel so bad. They have a hard time grasping when or why you can’t do something; especially if you have good days and bad days and on good days you’re okay to do some normal people things.
But, as the old adage says, “Out of sight, out of mind”. People forget. If you’re living with it and trying to have a normal life, people go on the offensive when they see you do something you can’t always do. Which brings me to point number two.
2. You have to defend yourself to people A LOT.
Yes I really do have this. Yes, I really am in pain. Sigh. Okay I guess I have to give you a ten minute explanation and defense as to WHY I am this way, why I can’t come to your thing; here’s WHY I’m poor. It’s humiliating. I mean, in my experience, I’ve had to speak this way so often, it has ended up as a pre-defense mechanism. Before you can even object to not being able to always physically see what is wrong with me, let me share my story.
I’m annoyed by it.
It’s become such a self-defense tool that it’s built up a very large wall around me. My openness has become my wall.
3. You learn who is there for you and who isn’t… and you have to let that go.
Woof. This is a hard one to learn, and relearn, and relearn some more. Not everyone can give you exactly what you need (re: support) all the time and vice versa. It gets easier to recognize this as you navigate your world, but it’s a very hard lesson to learn. People have their own lives and do not, cannot, always cater to you and your illness. Be gentle not only with yourself, but also with your loved ones. They are holding onto a lot of your pain so that you may breathe. It isn’t a failsafe, it isn’t a permanent solution. Be kind and gentle with them. “Thank you” goes a long way.
Sometimes you’ll have to let people go and sometimes people will let you go… and that has to be okay.
4. You have a lot of down time to face your demons.
Oooo baby. Because people can’t entertain you all the time (and again, they shouldn’t have to) you have a lot of down time to truly examine who you are, how you’ve come to where you’re at, what you like and dislike, and then get to buckling down and working through your shit. All of us (regardless of illness) go about this one at our own pace, and quite frankly, I don’t think we ever stop learning. Our experiences shape who we are and then we kind of need to iron that out so it fits within our self-constructs of who we want to be. You’ll get bored with tv, movies, and books. Settle in. Getting to know yourself is for the long hall.
5. You learn everyone has an agenda that they’ll try and push real hard onto you; regardless of how it may or may not fit into your life.
This is a hard one, and also rolls back into number two on this list. Look friends, everyone is fighting a battle you know nothing about. So, if someone is asking for help finding a job and they give you specific “do’s and don’ts” it isn’t because they just don’t want to do something (most of the time). People with chronic illness have limitations and those limitations vary from person to person. If the person has done at least a modicum of work on themselves, they know what those limits are and they find out more as they continue down their own path.
Stop trying to push your wants and wishes onto people living with pain and illness.
Usually, if someone is suffering from chronic pain, it couples with a mental illness. How could it not? Depression is very real. Anxiety is what medical professionals call a “piggyback” because if you suffer from chronic pain, you become anguished and fearful about many things (re: anxiety) and all of that can snowball into, you guessed it — depression. So, you trying to shove your agenda down their throats is rough. It increases feelings of low self-worth, increases anxiety, and generally makes the person feel like “they aren’t enough”.
6. You learn how important it is to be selfish. Or as the media calls it “self care”.
“Self care” is just a polite way to say “it’s okay to be selfish”. So, strike that word from the bad side of your vocabulary! Being selfish is important, but be careful, because as with all things moderation is important. That aside, make sure you are taken care of; do what you need to do to make that happen. If you need to stay in for a few days and replenish yourself, don’t let anyone make you feel bad for doing so. We live in a culture where society tries to shove self care down our throats but then tells us we’re bad humans for doing so. Why the hypocrisy? Just take care of your damn self.
7. This brings us to boundaries. Mine and yours.
Oh boy. When we don’t have boundaries, people will walk right over us. They can make you feel awful for taking care of yourself. I know a lot of people (and I used to be the same way) who focus very much on how you can’t come to this show or that show or whatever activity is planned. It’s hard to handle that kind of anger or passive aggressiveness when you are in pain. You want to be there (duh!) but being “flakey” becomes a part of who you are. And that blows. Trust me. When I say I’d like to be there and I’ll try, I mean it. But when the day comes and I can’t bring myself to do it (be it super high pain levels, social anxiety, depressive episode, or even the fact that something very important is happening the next day and I have to be okay for it) I need you to understand that I’m not dissing you. I’m not putting you on a shelf, but instead, and this goes back to number seven — I’m trying to take care of myself.
On the flip side, you need to set up boundaries, too. You can’t always be there for someone who is in pain or hurting. You need to keep your “self-care well” full, too. How can we take care of others when we’re not “full”, when we haven’t taken care of ourselves? Communication is key, here. Let there be boundaries by simply saying, “I care about you but today I need to do some things for myself.” If your friend or family member has done any work on themselves, they’ll get it. If they haven’t, give them some space and then have that conversation with them — you need to be taken care of, too.
Boundaries are hard things to put into place. We never want to make someone feel bad or like they are a burden. They are fine lines, but they are important ones. Communicate!
8. Rock bottom is truly a just a “picturesque” phrase.
There have been many “rock bottoms” for me in the past couple of years. I say that it’s a “picturesque” phrase because when you feel like you’ve hit your bottom, that bottom opens up to another hard fall and then there you are again. Only this time you’re looking up and thinking “Man, I wish I was back up there,” (to the previous rock bottom). Instead of focusing on how hard you’re falling, work on asking yourself this instead, “What can happen if I don’t give up?”; It’s a question I pose to myself a lot these days. Maybe it’ll help you, too.
9. It’s really hard to remain “you” under so much pain and pressure.
Chronic pain and illness changes you. No one wants to truly admit that, but it does. When you live with this type of burden and you feel isolated with it, it changes you. That type of weight on your shoulders makes a happy person very sad, a fun and goofy person very serious, and so on. People become angry — ”Why me?” It takes a lot of work to do the simplest things some days. On those days, people can look at you and the task you’re doing and wonder why it’s so hard. You become defensive and lonely.
It takes a lot of hard introspection to stay “yourself” and sometimes you just need to take that mask off and relax. Go ahead, zone out. It’s okay.
10. Asking for help us hard.
Living with chronic illness can be extremely isolating. You often feel like no one understands you and the pain you feel. But guess what? You aren’t alone. Even if you have zero family and/friends there is still a community at your fingertips online now. Maybe even an in-person support group (if your illness allows for that kind of mobility).
Asking for help has been a very hard lesson for me to learn. I grew up with very “Midwestern values”: You work and you work hard for your money.
But sometimes, no matter what you do, or how hard you try, you struggle in ways that are difficult for the people around you to watch. Let them help you in whatever way you feel comfortable. Remind them of what they mean to you. Let them see the pieces of you that are so vulnerable you never want to bring them out for fear of being shunned by those you love and adore. This same vulnerability, when shared, becomes reciprocated. And when something is reciprocated, how can you truly be alone?
You can also see this essay here