every thorn has its rose

So, living with pain. I have written about this before, and I’m not so sure my views have changed since then.

Pain — except for those few indescribably wonderful times when I’m in remission — is with me constantly. Of course it has turned me into a different person, someone I wouldn’t have been without it always by my side; even when I’m not in pain, even when I’m in remission, Pain still dogs me, following a few steps behind just waiting until whatever meds I’m on wear off a bit or stop working to step back in.

It would depress me, if I let it (though on some days or weeks, of course, it does depress me; of course it does).

As mentioned in that New York Times article, pain can very easily turn people into bitter, angry, closed-off people, completely focused on the thing that takes can and turns it into can’t. And I would be lying if I said I was immune. I am not perfect (as my husband can certainly attest to!), but I try not to let Pain take hold of me and turn me into something I am not proud of being.

The blessing and curse of  having an invisible illness is just that — it’s invisible. All people see is what I allow them to see. If I’m having a Bad Day, I don’t look any different. I just act differently. People don’t see my illness; they just see how I respond to it on any given day, at any given moment. That can be good and bad, but it’s certainly bad when Pain has put me in a rotten mood, and I’m just too tired or too miserable to control my behaviour.

Case in point: One of my co-workers, an older women, has RA. I didn’t know her before she developed RA, so perhaps she was always a petty, passive aggressive control freak who will make things more difficult for her co-workers if she’s not consulted before decisions are made. But I don’t think so; she has days when she is pleasant and lovely to be around, days when she goes out of her way to help. I think she has become twisted by pain. Our office is a small one, so the majority of us know that she’s ill. Some don’t, though, and just think she’s being a witch. Sometimes I feel that way too, but I try to be compassionate, try to help her along — when she lets me.

I think that may be an important lesson. Pain can turn us into wicked, twisted people who almost delight in our misery and the misery of others. I think it’s important to try not to allow pain to warp us in that way. I know it’s left its mark on me already, but I try not to allow it to take me that far. I try to take the good lessons pain can teach me — compassion, not judging others, kindness to all — and leave the jerk things it tries to get me to do behind. I’m not always successful, but I think it’s important that I try.


10 thoughts on “every thorn has its rose

  1. I worry about this also. While I rarely lose my temper (*I* think I’m cranky sometimes, but apparently I internalise it better than I think I do, because most people can’t tell until I apologise later, heh), pain does sap my drive. I work in a very social office and frequently run workshops where I need to be “on”. Some days it is difficult for me to stay focused, much less friendly, informative, energetic and positive, and yet all those things are expected of me (tomorrow is one of those days, and I’ll admit that I’m not looking forward to it at the moment).

    To a degree, we do get to choose how we let impact our lives- it will effect whether we wish it to or not, but we can decide how we will handle it. I find myself much less social than I used to be and was missing out. Now I have friends over every other week for informal tabletop boardgames, and this way I can still participate and be social without exhausting myself. It takes time and balance, and like so much of pain management you take it one day at a time.

    • Hi Elisabeth:

      Yeah, I think we’re much harder on ourselves than are others. I know I try really hard not to take it out on other people, though I’m sure I fail, especially with those I’m closest with. The compromise of having people over instead of going out so much is a good one. I know for me, finding the energy to leave my place is sometimes too much to handle. Taking it day by day definitely helps, but it’s harder some days than others. We don’t what we can, I guess. Luckily, if we have a bad day today, we can always try again tomorrow.

  2. I know that pain has left a LOT of bad marks on me. I try to push them down or work through them, but certain things can be too much to handle. But you are right…we can’t let it win.

    I really enjoy this blog Nessie, you should come visit me at my blog – It’s Time To Get Over How Fragile You Are!


  3. Even though this has been something I’ve had to deal with since high school, I still find it difficult not to turn into a whiny sad-sack when things get really bad with my illnesses. Most of the time I manage all right, but when something bad happens, my initial tendency is to freak out. But I have gotten better at calming down sooner and actually talking things through like a rational person if I’m feeling particularly crummy or depressed. Jim pointed it out to me the other day that I’m doing a lot better than I used to be in that respect. Instead of freaking out, then bottling everything up til I explode, I have gotten to the point where if I need to cry, I do, but then after I’ve calmed down I actually try to talk through a solution (even if it’s only temporary) instead of shutting off for the rest of the night. I still fall down in that respect every now and then, but hey can’t be perfect all the time, right?

    Having people over is awesome when you know you won’t have the energy to go out and do something! We’ve carried on the tradition of having people over for the semi-routine dinners (usually about once a month), and the great thing is that my friends always chip in and help with the cooking without being asked 😀 And it’s good to get the hangout time in, it’s really easy to feel super isolated if you don’t (something else I’m trying to work through).

  4. I think that I internalize more, but I get really pissy when other people who aren’t sick are moody or angry people. Then it is much less internal! LOL!

    Really great post!


  5. I love that you wrote about the whole picture of how invisible pain impacts us. I find that people that even know I’m in pain “forget”. Often when I”m in pain I just want to be left alone which is not usually possible and I’m sure I’m less patient, less understanding and less compassionate than I THINK I am.
    Judith Westerfield

    • Thanks for the comments, Dana and Judith!

      Dana — Yeah, I know what you mean, but I guess everyone has problems! Even when it annoys me, I try really, really hard at being compassionate.

      Judith — I’m the same way. I know I’m not as good to people as I should be when I’m hurting. I guess everyone has bad days!

  6. Hi there,

    I’m glad I stumbled onto your blog through the blog carnival. I really like your writing and the way you try to view the world despite pain. I have suffered from Spondylitis (a bad form of arthritis) in every joint since I was little and, as the pain progresses ad I need to figure out how to maintain a professional identity as a social worker in training, your post is very poignant for me. I just wanted to thank you for your words and let you know they really resonated with me. If you want to check out my blog sometime, I’d love that: http://www.lovingwithchronicillness.blogspot.com

    All my best,

    • Hi Maya,
      For awhile, my rheums actually thought I might have ankylosing spondylitis because of the spinal involvement of PSA. Thank you so much for your kind words! I’m actually reading — or maybe devouring is a better word — your blog right now. It’s great! I’ll be commenting over there, too.
      Thanks again,

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