“Disbelief in the existence or reality of a thing.” That’s one of the definitions of “denial,” according to Dictionary.com. My old Merriam Webster’s Collegiate Dictionary adds, “negation of logic,” and “psychological defense mechanism in which confrontation with a personal problem or with reality is avoided by denying the existence of the problem or reality.”
It’s something that many of us who have rheumatoid arthritis know rather well; I’ve not only read the word “denial” or actions that imply it regarding the symptoms of RA on several blogs written by sufferers recently, I’ve mentioned it myself. We don’t want to believe in RA; or rather, we don’t want to believe that we have it.
Another common theme is the hope for “remission.” Here’s Dictionary.com again: “a. a temporary or permanent decrease or subsidence of manifestations of a disease.
“b. a period during which such a decrease or subsidence occurs: The patient’s leukemia was in remission.”
It’s almost as if we’re in conflict with ourselves. On the one hand, we do all we can to deny to others (and to ourselves) that we actually have rheumatoid arthritis. On the other, we hope for and dream of the day the medicines work or that through our own hard efforts to eat carefully and take great care of our bodies, we can change our internal physiological environment and make it so uncomfortable for RA to thrive that it shuts down and leaves us alone. We long for our disease to be thrown into remission.
But what is this, really? What am I trying to prove?
I know I have RA. Dang, I’ve had RA for 22 years now. I have a very solid diagnosis, even though my disease doesn’t necessarily look or act like yours. For example, I have very little joint destruction and, at the moment I write this (it could always change), I have pain that is generally centered only in my wrists and hands. It hurts like a you-know-what sometimes, but mostly I can grit my teeth and bear it. My RA rarely disables me.
But that’s right now. This moment. In the past, my hands have been so stiff and the pain so intense that I couldn’t get a door open or pull up my drawers after a trip to the powder room. I’ve had times when I couldn’t bear to put my weight down on one foot or the other. I’ve been forced to use a cane to walk, and more than once I’ve had to swing along on crutches for weeks at a time. My shoulders have flared so painfully in the past that I had to have help getting dressed. “Gimp” has been my middle name. Forget “Grace.”
This is simply the truth. Most of you who’re reading this know exactly what I’m talking about. You’re probably rubbing your fingers gently in empathy without even realizing it.
And yet I will go out of my way to hide my pain. I will force myself through tasks that cause me agony (folding laundry or taking the cap off the jam jar). I’ve gone hikingwith a flared foot or knee or shoulder or hand. I’ve gone on 20 km bike rides, or stood in long, long lines at the grocery store on feet that feel like someone’s been beating them with baseball bats. My feet have throbbed so intensely with my heartbeat that I’ve had to shift back and forth on them like a child who desperately needs the bathroom.
I’ve had pain and times of disability so intense that I simply broke down and cried. This is big deal for me, because I’m one of those people who, by nature or nurture, has always been calm and stoical. It takes a hell of a lot to bring me to tears. But rheumatoid arthritis has done it many times over the years.
So why do I keep trying to hide my disease from others? Is it denial? Do I simply not want to believe that I actually have RA?
Well sure, that’s part of it. I don’t want to be sick. Surely, I don’t want to have a disease that’s not only incurable, it may also eventually twist my hands and feet into ugly, misshapen, useless knots, disabling me to the point of having to get around in a wheelchair and depend on others for even the most basic tasks in life. I don’t want to have a disease that may, along with the above destruction, also rob me of my voice or my eyesight, or even my hearing. I dread having a disease that might do all of those things to me — and then turn around and ruin my heart or my lungs and kill me, too. So long, world. It’s been nice…
I do not want to believe I have a disease that can wreak such havoc on my body. But I do have it. That’s my reality.
So I accept it. No choice. But I’m not disabled yet, so I do what I can to keep my pain to myself. Because I never know from one day to the next – hell, from one moment to the next – which joint or joints the rheuma dragon is going to attack, and because I have days when he just teases me and lets me get on with things without much trouble, my friends and family and acquaintances are used to me being able to function normally a good deal of the time. Naturally it takes them off guard when I suddenly can’t lift that sack of groceries or cut my own meat. Of course they’re surprised when I have to beg off an outing we’ve been looking forward to because my foot has flared or because I simply can’t face gripping a steering wheel, or lifting a fork to my mouth at a restaurant, or sit still for two hours in a movie theater seat while my hip feels like it’s in the midst of being dislocated from my pelvis. They’re disappointed in me because I was just fine a few days or even a few hours ago.
And being like that embarrasses and humiliates me. So I try to hide my pain. Just bull on through. Keep smiling even though inside I’m moaning with agony and my face is a death-mask. I’m tough. I don’t want to give in to my RA; I don’t want to let myself be disabled and more than anything else, I don’t want others – my friends, my family and my acquaintances – to think I’m a weakling, an attention-seeker and worst of all, a hypochondriac. Because they do think that of me even if they don’t mean to. And I hate it.
Is that denial? You tell me.
As for remission: I know it can happen because it happened to me. I’m one of those lucky few whose RA really did snooze off for several years. From 1998 to 2005, to be exact. During that time I almost but not quite forgot I had rheumatoid arthritis. My memories of the bad old days were still crystal clear, though, so whenever I’d feel a little twinge in a great toe or a hip or a wrist or shoulder, I’d brace myself automatically and mentally prepare for the dragon to bite into me with his wicked sharp teeth and pit-bull jaws. But with only a couple of exceptions, those twinges never became more than twinges while I was in remission. I can’t describe the depth of my relief or my gratefulness.
I’ll be honest: I pushed myself to forget my RA. I was superstitious about it. I was terrified that if I thought about it too much, I might give it shape and mass and make it real again. And oh, I didn’t want that.
So it’s OK to hope and dream for remission. In fact, that hope keeps us going, I think, because we know it really can happen. Maybe only a small percentage of those of us who have RA will ever experience remission, but so what? It happened for me; perhaps it will happen for you.
Can denying RA make it worse?
I believe it can if we’re so determined to deny it that we don’t take care of ourselves and do the things we must do to fight it. If I don’t take my meds, or you aren’t careful about what you eat (if that’s the treatment for RA that you’re using), then chances are, we’ll get worse. If I deny my pain and force myself to do things that cause me more pain and fatigue, or that actually injure my inflamed joints, then yes, my RA may get worse.
So there is logic and virtue in admitting to myself and to others that there are times when I just can’t do it all. If my friends can’t accept that, then I should probably wonder just how much they really do care about me. If my family can’t accept it, then perhaps I need to educate them better about RA. If my co-workers can’t accept it, then other than try to educate them, too, there’s not much I can do about it. I can’t change other people. I can only change myself.
Having RA teaches us deep lessons about humility and inner-strength. I know – we know – that the pain, the threat of disfigurement and disability are dreadfully real. I also know that I’m not going to let the damned rheuma dragon take my joy in life away from me. I’m going to keep doing as much as I can, as mindfully as I can, to slow the progress of this disease and mitigate the damage it can do. I’m not going to let others shape how I feel about myself, because I know I’m strong, and I know that I’m not trolling for sympathy and attention if I ask for help. I know I’m not a hypochondriac.
I just have rheumatoid arthritis. If a little denial and a lot of hope help me cope with it and live my allotted time on this old Earth with joy and laughter, they can’t be all bad.
Wow- I have never really thought about it as denial when I push through and do something that I know will “cost” me later. I just do what I have to do and deal with the consequences later. I have alwasy thought that for me it is more about me trying to prove to myself that I am not going to let it win. Now you have given me something to think about. Thank you!
This sounds a lot like me. I was diagnosed this past year and I am seronegative which is another thing that leads to me to question “do I really have RA”? I guess I do really have it lol….I don’t think the normal person hurts like this during the winter. I remember a time when I didn’t. I remember a time when I loved winter and could not wait for the cold weather. Now I dread it and hope I can make it to spring. RA changes your life. It has changed mine. I fake like I am okay most days cause I don’t want my daughter to grow up remembering a mom who didn’t do anything with her. Some days..I lose this battle and she understands. But, hey, even moms without RA are entitled to have “down” days with headaches, etc. Some days (mostly in the summer) I actually feel normal and that is another reason I get the doubts in my head about having RA. But, RA is sneaky and will strike again before you know it. For now..I’m just praying spring comes early and the groundhog was wrong 😉
You make some very good points. There’s value in acknowledging the disease and doing what’s necessary to take care of ourselves, while at the same time not becoming whiners who let the disease rule our lives. Finding that balance can be tricky.
I absolutely agree. Pushing through something I know I shouldn’t be doing IS a way of denying my RA, but I don’t think it’s necessarily a bad thing. I’ve done many, many things I probably shouldn’t have, and I wouldn’t trade those experiences for anything, even though I paid for them later. Thanks for another thought-provoking post, Wren.
I like what you wrote in this post- some of the points you raised are very real and true to myself. Thinking back again, i don’t think i was in much denial. Maybe to some extent, but i was more worried of judgements passed. Sometimes i pray and beg for a remission, but after awile being near remission, i hope that it all comes back again. Just to tame the ‘wild tiger’ in me, humble myself, to slow down, and take things slowly. Right now, i’m hoping for a massive flare. Call me crazy, but it helps me a lot as a person. 🙂
Thanks again for this post!!!
Thanks for this post – it was just what I needed. I’m dragon slaying these days – but doubting myself all the way. Should I really take a break from exercise today? (Umm – yeah – the doctor said no exercise for a few days!) Is this swelling really the RA or did I just eat something salty? (Now if that’s not denial – I don’t know what is!).
Fortunately, I have an amazing husband who knows when I’m hurting (even if I won’t admit it) and keeps me in check. Doesn’t mean it’s not hard to listen – but it is nice to have someone who has your back…
I also accept that I have RA, but I’m not giving in to it. It may be a form of denial, but I still try to do as much as I can and still am able to do a number of activities that I did in my pre RA days.
What is frustrating to me is how I can go out and ride a 100 mile ride on my dirt bike still, but then drop almost everything I pick up on any given day. Or how I can break an axle nut loose in the shop with no problem, yet struggle to take the lid off of the toothpaste. It is embarrassing.
Denial is part of survival as is acceptance. Remission, for some, is like finding the Holy Grail. I chuckled at the “gimp” vs. “grace” comment – I know that feeling all to well. I am not sure if I will ever remember a time that I was “graceful.”
“I do not want to believe I have a disease that can wreak such havoc on my body.” You do not know how many times I have uttered those words.
“Having RA teaches us deep lessons about humility and inner-strength.” More words I have uttered.
When reading this post, I felt like I was the one writing it and I haven’t dealt with RA as long as you have had to. Two years after diagnosis and ten years of wondering whether it was all in my head – Experience is all I have to make it through some days. I miss the days where I had more control where I would go through weeks and even months without pain. Now I am lucky if I can one day.
But like you said, you accept it because you don’t have a choice. That is why we all do.
Take care, my friend. I always appreciate your comments and kind words at my blog.