Of Irony and Hope

There are so many reasons that make living with chronic pain difficult. If you are reading this and you are living with chronic pain you certainly know what I mean. Off the top of my head, in case you are reading this and don’t understand or have someone in your life struggling with it, let me give you a few examples of what I mean.

1.) When I tell you I have other plans, it’s my polite way of saying: “I’m going to lay on the couch and not move and try not to breathe too hard because it hurts.”

2.) If we don’t have a job, it’s not because we are lazy. We want to be productive citizens, as much for reasons of income as for feeling useful and self worth. When you suddenly find yourself at home all the time and reliant upon other people, you begin to question your purpose. And when you question why you are here, it can lead to very dark places.

3.) Paingry is real. Pain+Angry which can lead to shortened temper and any number of things can trigger it. It’s not that we’re impatient, it’s that we’re in pain and frustrated because it never goes away. It’s a difficult thing to explain to anyone, because for most of us we go about our day and our lives and when people see you going about living, they think you are over exaggerating  the pain you feel every moment of every day. It can make us angry when we have to justify our pain.

4.)We get really excited when we have a good day. Why is this difficult you might think? Because for every good day there are 2-3 bad days where we can’t accomplish or enjoy the same things we did. The analogy I like to use is giving a child an ice cream cone and then after they taste it, ripping it away from them. This also brings us to the focus of this post, and what I think is the most important difficulty among the chronic pain community in which they deal with regularly.

The Irony of Chronic Pain: The general public has no understanding of, or very little understanding of chronic pain illness. Chronic pain has no outward symptoms like fever, sore throat or congestion; it doesn’t necessarily mean you are walking around with a walker or some other assistance either, and so people only see the superficial surface that you might present. You might be dressed up, or attempt make-up and do your hair or shave, if you are a guy..whatever to make yourself feel better or even disguise your pain to the outside world and the perception becomes: “Oh, well she/he feels well enough to get dressed up so why is she/he complaining?”However, and here is where the irony comes in to play: If you wake up and only manage to crawl to the couch, where you proceed to spend the rest of your day or cancel plans with people suddenly you must be exaggerating how you feel and in the same breath it goes from “You don’t look sick,” to ” She’s just lazy, o r unmotivated. Just exaggerating how she feels, nothing getting out and about won’t fix.” I shouldn’t have to justify how I feel. I shouldn’t have to defend how it is I am feeling because people do not understand, but I do. I go through the trouble and sometimes very awkward conversations where I have to explain at length why I am feeling miserable and how taking a nap doesn’t alleviate the pain, and soaking in a tub might offer temporary relief but it’s not sore muscles because I pulled something. Yes, for me, some things are structural, meaning that I have things that are physically wrong with my bones that cause pain, but neither is there a fix-it-all for it and fibromyalgia does not have a magic pill yet.

I take a moment to reflect here. I wonder if all this makes me sound bitchy? Maybe I am paingry again? But I honestly don’t think so. I feel misunderstood 90% of the time, by people I don’t know and even my close friends and family. Don’t get me wrong, I know it’s not intentional. But this is why I am here. I want you to understand that you are not alone, and if you have friends or family that don’t understand what you are going through or think you are the only one feeling this way that you aren’t. Have them read this blog. I have watched and seen the difference between how someone like me is treated, versus how someone who is dealing with a more devastating illness is treated. For instance, cancer. Now wait a minute before you get all puffy chest and indignant with me. I know very well- very painfully well, that cancer and chronic pain is different. I’ve watched a good friend go through cancer and beat cancer only to be going through it again and I think there is still an analogy to be made. No one ever came up to her while we were at work, and maybe she had gone through some effort to make up her face or hair and exclaimed, “oh, I’m glad to see you are feeling better!” While it is a perfectly nice thing to say, people seem to understand collectively, that people who are going through cancer, regardless if terminal or not or type of treatment, are maybe not feeling like themselves. They understand on some intrinsic, and unspoken way that cancer is not something that is healed over night and sometimes not at all and so there needs to be some thought taken before approaching a person. People with chronic pain aren’t afforded that thought and I wish there was not this presumption that because I look better means I am better. As difficult as it may be to wrap ones head around it, people struggling with chronic pain, myself included, almost never feel good. And on those days I am feeling my version of “good” it may mean that my body isn’t feeling like Wolverine when they were injecting the adamantine into him. (Apologies for my geek girl coming out if you don’t understand the reference. The best non-geek I can come up with is when you work out at the gym after not moving for 6 months..that soreness where you feel just breathing might kill you? Now multiply that by 100.) I still have to lie down most days, mid-day just to cope and I take pain medications round the clock to deal with the pain. Even on the “good” days. Chronic means on-going; which means I may never get “better.”  I am just trying to cope and live my life. This is the part I think confuses people most. They can’t seem to understand how if I am in so much pain, how I can go about my day and do the things I normally do or even find a reason to laugh or go out with friends. Chronic pain doesn’t mean my life has suddenly come to a screeching halt. I have a family, I have kids and I have a life. I would not call myself a bubbly, effervescent sort of person, but I am happy. And though it might be difficult to understand how I can simultaneously be happy and want to lay down in a dark room with heating pads covering 90% of me, it’s the truth. I had a few weeks, when I realized that this was going to be my new normal where I cried. I cried hard and felt awful about myself and miserable about my future. But my life is what I make out of it and it’s not over because I hurt. It might mean a new reality, that includes a disability placard for my car, but in the grand scheme of things, that’s doable.

We need to change the way we perceive chronic pain. Chronic means ongoing. It means there may never be a cure and that this new reality could be permanent. What it doesn’t mean? It doesn’t mean that that this is the end. It doesn’t mean that the road stops here and you are no longer able to live your life. It may mean lifelong but some days will be better than others and you have to treasure those days. So if you are reading this and wanting to know how you can make a difference in someone’s life who is struggling with chronic pain, I will offer you this kernel of wisdom: Please, oh please..don’t assume they are exaggerating or that they will get better or must be better because they look spiffy one day. Don’t judge. Not for when they look like, whether they come in sweat pants or a dress. Just don’t. Try being empathetic and understanding and have a willingness to listen. Listening to us means the world. It’s not easy keeping everything together when you feel like your body is warring against you.  We are all different, we are all complex and no one of us will exhibit the same range of symptoms so don’t contradict how someone is feeling because WebMD didn’t list it. Be a friend. Be an advocate. And don’t be afraid to learn about it.

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