I’ve been struggling with chronic pain officially for ten years as of this Fall. Unofficially, it’s been about fifteen years. For fifteen years I have had to consciously manage my back pain.
That’s not only more than half my life, it’s also the most important years of my life. I was thirteen the first time my back “went out.” It eventually influenced who I became and how I shaped my future. It’s not a coincidence that I work remotely most of the week. I can’t physically be in an office full-time. I also didn’t go to school like a regular student, even when I was enrolled in an on-campus program. I just couldn’t.
Where things get weird with chronic pain…
Throughout my time living with the pain, I’ve gone through periods where it was unbearably worse than normal. This week was one of those times and I realized that no one near me has actually ever experienced “me” in this state. I haven’t lived at home ever while my pain was on this level of crazy. It got close recently, but not this bad. So this time scared me. How can I get help if no one knows what’s going on?
Cycles of good times and bad times are normal for someone living with chronic pain. But to those around us, it’s awkward and taxing. We may need help on a normal basis, which is already annoying to everyone in our lives. But when we’re at the threshold of insanity because our pain reached the maximum level three days ago and we didn’t want to bug anyone, that’s when we need help the most. And we won’t ask for it 90% of the time. When finally we do and we’re shot down, we’re devastated. It took a lot of courage to reach out in the first place.
Something I hear more often than I should when I’m in severe pain is, “I don’t know how to help” or “I can’t help you.” So maybe it’s just that it scares people away. But, it’s not scary. We need help with the littlest of things.You absolutely can help someone with chronic pain when they're at their worst. It's as simple as stopping by to sweep the floor, do the dishes, or bring food. Click To Tweet
It’s really simple to help someone like me. Just saying “hi” might make the difference between one too many pain pills, self-harm, or a few too many shots of whiskey. Pain is really hard to handle long-term and a tiny glimmer of help from a friend goes a long way.
Why Can’t You Help Yourself?
Everyone’s case is different. People live with chronic illnesses and pain for all kinds of reasons. Mine, in particular, is the result of a neglected back injury gone very, very wrong. I’m lucky I’m not paralyzed (yet).
While I can still walk normally and do most activities most people do on a regular basis, that’s really a façade. It hurts to do any of it. I’m never not in pain. When I say that I am and acknowledge it, I’m at about a 7 or 8 on someone’s normal scale. On mine, it’s a 4 or 5 and I think I can keep going or not ask for help. By stating that I’m in pain, in my mind, I’m letting those around me know that I’m reaching my physical limits.As someone living with chronic pain, my pain scale is heavily skewed compared to a normal person's. When I just start to realize I'm in pain, that's when I'm getting at my limitations and should stop what I'm doing. Click To Tweet
Occasionally, because most people with chronic pain will not tell you when they’re at their limit, we go over it. At that point, we really cannot do anything, especially if the pain is related to a back injury. Mine, specifically, could end up in paralysis if I’m not careful.
It took me a lot of mental energy, but I finally caved and asked for all the help I could this week. Those who came through, or even offered to, have made a huge difference in my mental state. All you have to do is offer to help in some way.
What does Chronic Pain do to a Person?
Earlier I referenced “me in this state” because I am truly a completely different person when the pain becomes what I call “code red.” It’s not that I am a different person, but all I can think about is the pain and how to make it stop. It’s like a drug addict but in reverse. For this reason, I’ve denied addictive medication since my last surgery (May 31, 2012). Imagine if I’d have been on it this whole time…
- Depression and Anxiety
- Lack of Ability to Make Simple Decisions
- Short-Term Memory Loss
- Lack of Attention Span
- Lack of Motivation
On a regular basis I struggle with all of these things, but when my pain level reaches “code red,” they’re amplified. I can imagine that everyone else with chronic pain feels the same way.
It’s hard to see past your flaws, hope that things will get better, or remember anything. Details don’t matter because nothing except the searing pain in your body does. Helping someone in this state of mind seems so much more complicated than it is.
How to Help Someone With Chronic Pain
At times like these, we need our family and friends to help the most. Get past the bias you may have created and see the reason behind our behavior.
- You see laziness because our house is filthy. We see embarrassment because we couldn’t physically clean it.
- You see frantic indecision and dependency on others. We just can’t think straight because half of our mental energy is spent subduing the pain.
- You see helplessness and self-pity. We just can’t see a way out.
- You see forgetfulness and a lack of caring. We just don’t have the chemicals left in our brain to remember.
We know that we’re messed up. We aren’t looking for you to fix us. If we reach out, we really just need help. You can help literally anyone suffering from chronic pain, especially when they’re at their worst, just by:
- Stopping by to say hi.
- Bringing food.
- Cleaning and helping around the house.
- Making time to hang out at home with us.
- Taking out the trash.
Don’t Expect Us to Get Better
Helping without expectations is crucial. When I say expectations, I mean the expectation that the person will get better. Asking when someone will get better, how they can, or what will make them physically okay again, is the worst thing you could do. Many people have already had the “this is it” talk with their doctors and relaying that information over and over again to people who are still in denial is purely torture.
Recently people have asked me questions along these lines, and it’s not a bad thing the first time. It’s fine to explain once to each person, but it’s the denial that always gets me. Most people reply,
“No. You’re too young. There must be something they can do…”Don’t say this.
If your family member or friend with chronic pain says there is nothing left for doctors to do to help, don’t challenge it. Trust me, they’ve looked into every possible way to relieve themselves of the agony they’re going through. Asking about it makes it worse and makes them feel guilty about it.
Asking how we’re managing the pain is different and we can answer that really easily. (I’ll cover that in another post later on.)
Don’t Give Up
One final word, just because life with chronic pain is bleak, doesn’t mean you should give up on someone. I was at the lowest of the low, the worst of my pain for the most extended period of time when most of my friends seemed to just abandon me. Part of it had to do with the church culture we were part of, the other piece I found out later on. I was talking to a friend about why no one helped me right before my second back surgery when she said, “You were just too depressed. We couldn’t help you.”
She was wrong. They could have helped by just checking in on me. During that time the only thing that got me through were the very few people who did those small tasks for me. They took out my trash, brought me food, came to say hi, sat with me, carried my stuff the few days I went to class, and more.
It’s the little things that matter. If those people hadn’t done that for me and everyone decided that I was just “too depressed,” I wouldn’t be here today. Instead of carving “Job” on my leg to remind me of the Bible story where everyone turned their back on a faithful man, I would have dug a little deeper into my wrist.
It seems dramatic to say, but it needs to be said. People forget how serious chronic pain is. Don’t give up on those you love, especially when they’re “too depressed.” Their pain may be a burden on you, but imagine how heavily it weighs on them.