Monday 23 September 2013

The Emotional, Psychological and Social Cost of Pain

When you first start to feel pain, sure you're miserable about it. Still, most of us would assume that it's temporary, and that a couple of pills will take it away if we want to resort to chemical assistance - especially if there's no obvious cause like an injury. One day turns into two and then three. After a week goes by, with no relief no matter how many pain relievers you take, you're in nothing but a blur of pain-filled days. You've booked a doctor's appointment that you don't even feel well enough to go to. You want to curl up in bed with the blinds closed and the lights out, vowing not to get up until the pain retreats. Still, you know you need help, so you go to your appointment, your body tense with pain and anxiety. Whatever is wrong with you, it can't be good.

Stock Photo

Your doctor won't know what's wrong with you at first, so there's going to be a delay in the diagnosis. The length of that delay will depend on how unusual your condition is, and your personal doctor's level of knowledge in that particular area. If you're lucky the problem is pinpointed quickly, and some form of treatment can start. If you're not so lucky, a year or two can go by while they mess around with various tests. That was my personal experience, and I don't wish it on anyone. However, there's a lot more involved with being in pain than what the doctors will ever bother telling you.

To start with, you're going to become a different person, and it's damn shame your doctor won't see fit to warn you about that. It would be nice to be able to tell the people around you that they're going to see some changes in you. You won't necessarily see it happening at first. We all get a little cranky when we're in pain, and that isn't a surprise to anyone. Constant pain, however, takes a huge toll on our emotional state. When the pain doesn't lift, quite often our mood keeps sinking along with our feeling of well-being. Then, when you're no longer as happy as you used to be, and it never lets up, the people around you are going to react to that. They're going to lose patience, no matter how saintly they are when things start out.

Now, here you are, in agonizing pain. Suddenly your understanding partner is no longer so understanding and they're ready to rumble. They don't like being snapped at and ignored. Who does? But then, who enjoys being in pain and feeling like they're being picked on? You're in the weak position at this point. You don't feel strong enough to fight back, but then you certainly get angry enough and you snap. This is where the rage monster, the one you never knew hid inside you, suddenly reveals itself. Quite frankly, the strain on your relationship is more than most people can ever imagine.

Many years ago I went for some counseling to understand certain aspects of a difficult childhood, and I mentioned to the therapist that I'd experience headaches my whole life. They were literally non-stop, 24/7 headaches. I was always on pain relievers for them. Thankfully a year or two later the headaches stopped for no discernible reason. Believe me, it was a weird sensation to stop suddenly one day and realize, "Wait a minute. Where's the pain?" However, when I mentioned this to the therapist she explained something to me about how pain changes who we are. This was in addition to the strain on our personal emotions, and the anger and irritation we're bound to feel. Let me explain.

Pain causes social withdrawal. Imagine you've got plans to go out with Bob and Fred, the couple across the street, for a night of fun and frivolity. Do you really feel up to dancing your butt off to the latest Miley Cyrus twerk-fest? Not so much. Besides, the hammer-licking schtick isn't really up your alley these days. No, what you really want to do is the same thing you wanted to do the day you had your doctor's appointment, and you're pretty darn sure that shaking your body around isn't going to give you any hope of feeling better. So, you cancel. Maybe your partner goes out anyway, which you resent. Or maybe they stay home and give you dirty looks because you're just not a whole lot of fun these days.

You cancel your plans over and over, until one day there are none to cancel because you're just not making plans now. Now you just want everyone to leave you alone with your misery. Misery of that kind does not love company, let me tell you. That misery wants to crawl around in cold dark holes, hissing at every living thing that passes by. It doesn't matter if those living things happen to be your offspring either. Your relationship with your partner and your children can deteriorate very rapidly, and hearing your little ones ask why "mommy is always so mad at me," will break your heart, make you feel shame and guilt, and then piss you off, because, really, why the hell doesn't anyone understand that you're in pain?

You've alienated your friends, your partner and your children, and probably any extended family as well. People get sick of hearing about your days anyway. They don't want to hear the constant litany of complaints that's your only well of conversational topics. What do you do all day besides suffer? You can't talk about the football game you never watched, or the latest movie you haven't seen. There's no point in talking about the lives of your friends, because they could be dead at this point for all you know. You might be able to entertain them with the story of how you watched the dog humping your leg because you just couldn't bring yourself to care.

Situational depression has set in, taking up permanent residence it seems. Now you're not angry. Now you're nothing inside. Your doctor wants to put you on pills. You'll probably take them in the hopes that you'll actually be able to care about something, or maybe you hope they'll numb you further and help you sleep. Either is possible with anti-depressants. The problem of course is that you're not experiencing a chemical imbalance. You're in pain! It sucks! Who wouldn't be depressed by that? The only cure for that depression is to get rid of the pain, which is often easier said than done.

So many people are condemned to pain for the rest of their natural lives. There are medical conditions that there is very little treatment for, and even the strongest narcotic pain relievers aren't enough to relieve all of the symptoms. I can think of several examples. I have a friend who contracted a very rare sort of flesh eating condition. She's in constant pain and there's no cure. I know someone else with ankylosing spondylitis, a form of arthritis that fuses your spine together, among other nasty things. One of the treatments that partially works to slow the condition and relieve the pain can come in at a cost of $72,000 per year. Take a look at Mick Mars' page (lead guitarist for Mötley Crüe) on Wikipedia. He suffers from the same condition, and is three inches shorter than he was in high school. With all the money in the world, he was unable to do anything to help himself.

Mick Mars - Wikipedia
Pain traps you, caging you in misery. Whether or not escape is possible obviously depends on what's causing it, but the long-term effects of living with pain are excruciating beyond the pain itself. If you can't find a way to live with the pain, your former life is over. That's what the doctors won't tell you. Instead they let the knowledge sneak up on you, and then it's too late to prepare yourself or your family. You don't smile at the jokes that made you fall in love, you don't tickle your kids until they're squealing, and your dog never learned to shake a paw or stop humping your leg. Your old friends ask, "Whatever happened to what's-his-face?" But they don't really care what the answer is anymore.

Suicide can happen, particularly with people that have been diagnosed with something incurable. Or they opt for procedures with high mortality rates, because they feel it's worth the risk. In the case of ankylosing spondylitis, patients have the option of a stem cell transfer, which is extremely dangerous. Your immune system has to be completely killed for a short time and then clean stem cells are re-introduced into your body. The risk is that your immune system might not start up again, or that you might catch something while it's completely turned off, so you die. Still, when living with that kind of pain it's something that people seriously consider. It's preferable to suicide at least, since there's a pretty good chance you'll live through it and then quite possibly be cured because your old, diseased stem cells have been killed, and healthy ones begin to spread through your body. If you're curious about the procedure, you can read about it here.

In future posts I'm going to talk about ways to handle your pain, including medications, mental and physical techniques. You may have options you're unaware of, that can take the edge off the pain and make your life more bearable. Be as patient as you can be. The answers will come.

Saturday 21 September 2013

Let Me Entertain You - An Introduction

My name is Rain Stickland, but you probably already know at least that much about me. What you may not know is that I'm a 42-year-old woman (at this writing) who is dealing with a temporary, albeit long-term, disability. The biggest reason for my disability being long-term is a diagnostic one. Basically my doctors didn't know what the hell was going on with me. My personal blog, Torrential Rain, carries a highly-detailed description of my journey toward a diagnosis, so I won't present another long-winded explanation here. You can click the highlighted link if you're interested in reading an encapsulated version of that difficult trip. My intention, however, is to delve more thoroughly into those happenings so that readers of this blog will get real information about what goes on medically, physically and emotionally when you're suddenly facing ongoing disability and pain.


There are a great many unpleasant surprises that come along with an unwelcome diagnosis - things your doctor doesn't mention, and probably doesn't even know about. It's not simply the emotional impact of denial and eventual acceptance. Nor is it an easy matter of learning to get around your own home again, a place you're already very familiar with. There is real fear involved with disability. Some of that fear is well-justified, and some of it may seem silly and paranoid. Some of it is only temporary, but some fear will be with you for a very long time.

I'm not a doctor. I'd better say that and get it out of the way. In fact I'm not very well-educated, in a formal sense. I'm what they call self-educated. I'm a writer, producer and business-owner who does a lot of research for reasons both personal and professional. I didn't finish high school, and what post-secondary education I got after-the-fact was related to computer programming, accounting and payroll. I've taken no courses in medical, psychological, pharmaceutical or scientific subjects. However, what I've managed to learn through my own research has helped not only achieve my own diagnoses, but also assisted others in learning about theirs. I've helped people with everything from diabetes and arthritis, to leukemia. I am very, very good at researching and understanding such topics, and then breaking them down into more understandable terminology, and that's one area where I can help my readers a great deal.

Apparently it was Aesop who predated Plato in saying, "Necessity is the mother of invention," and that's something else I can help with. I'm actually an inventor of some interesting pet products, and tend toward a creative mindset, which I've found constantly helpful during my currently disabled state. Admittedly I am far less disabled than many people who might read this. My disability is basically that I'm not really supposed to be walking right now, and I'm in constant pain that exceeds what I felt during childbirth. I have hip tear injuries that get worse the more I use them, and I'm currently awaiting surgery on both hip joints to repair the damage. That being said, pain is a lot more debilitating than is realized by the general public. There are those who cry and run away at a paper cut, and their whole life would collapse if they had to deal with real pain.

Let's face it, though, when a disability is sudden, or we get a sudden diagnosis that we're going to be disabled, our lives do collapse. The way we're living collapses. We're faced with rebuilding our lives in a new and complex structure, in ways we never imagined would be necessary. Young or old, rich or poor, people become disabled all the time for a wide variety of reasons, in a wide variety of ways. Granted, it may be easier to be rich and fully able to outfit your home with whatever you might need to make living a little less difficult. Having money doesn't negate the emotional and psychological impact, however. They just don't have the psychological strain of wondering how the hell they're going to make ends meet because they can't work.

That's another thing I'm going to be talking about in this blog. In many cases there are ways around not being able to work. In my more political, activism-type writing and work, many people consider me to be a left-leaning liberal, and for the most part they'd be right I suppose. There are some areas, though, that I just don't fall under that umbrella, and one of those areas is in the realm of self-sufficiency. Don't get me wrong. There are many, many cases of people sincerely not being able to work in any way at all. I've been there myself, and I'm still there right now to be honest. I can work doing this kind of thing, but because I'm on medications and I've got surgeries coming up with long recovery times, I'm incapable of maintaining a regular schedule. Freelance work where the people I work with are understanding about my situation, is the best I'm able to do.

There's nothing wrong with being on disability when you need it - I'm certainly not in a position to tell people otherwise. My point is that there are a number of people who can work, but it's in a way that's new to them. People who needed their physical bodies to do their jobs, and are now confined to wheelchairs, will have to find a different type of work if they want to be self-sufficient. So, I'm going to talk about potential employment options, including self-employment. That's something I have a fair bit of experience with, which means the help will be real help from a real person who actually knows what they're talking about. I've been there. I've started a number of businesses for myself and others. I've worked as a business consultant, and in the corporate world. Working in accounting, payroll and investment finance gave me a well-rounded education in business, too, including management and supervisory experience.

You're going to get to know me quite well by reading this blog, I guarantee it. You're also going to learn pretty quickly that you'll get quality information from me as we go along. I do my research, and I'm constantly learning. The more I learn, the more helpful you're going to find me. So, there's not much point in me continuing to ramble about myself here. You're going to find out soon enough. Please leave your comments and suggestions on my posts so that I can learn from you, too. If you've experience a difficulty, or you've found a solution to one, it's only going to help the other people who read this. I won't get to every subject all at once, but my first few postings are going to range broadly in topic and give an overview of what you're going to see from me in the near future. I look forward to interacting with all of you, and good luck with your own challenges!