Real RA: The Great Pretender
People with RA lie all the time.
How are you?
Fine. You?
How’s the pain today?
Not bad.
Are you worried?
Not at all. I’m sure everything will be OK.
It’s a necessity of life with this damn disease. If you’re honest, not only will your friends and family start avoiding you, but you’ll start to bore yourself, too. There’s only so much unrelenting crap anyone can deal with before it gets old and miserable and you want to run screaming for the hills. But when you live inside the crap, there’s no way to run.
And so you lie.
You lie to the people you love most because seeing the worry in their eyes makes you want to protect them. You lie to acquaintances because it takes a certain level of intimacy to talk about the true impact of your RA on your life. You lie to the clerk at the grocery store because she doesn’t really want to know how you are while cashing out your orange juice, crackers and toilet paper. You lie to your doctor, telling them only the most urgent issues because otherwise you’d be there all day. And you lie to yourself, because if you don’t, if you give it half a chance, the RA will take over and consume your life.
Sometimes, living with RA is like being a duck. You look cool and calm, but underneath you’re paddling like mad. To achieve that cool and calm, you have to play fast and loose with the truth. The truth is hard and ugly and painful and cannot be allowed to gain purchase. The truth will slide over you, slowly covering all of you like an oil slick until it weighs you down and you cannot swim anymore.
That’s what it feels like. The harder it is, the more important it can feel to maintain that duck-like serenity. Everything is out of control, so you control what you can. You hold on tight, pretending to be better than you are. You fear that if you let go, you might disintegrate.
But will you?
I spent my entire life pretending I was better than I was. More capable, with more ability, less pain and during the rough times, coping far better than I actually was. And then I had the Big Flare, got Enbrel, got better and made myself a promise. I decided to become the person I’d always wanted to be and that wasn’t just about becoming a writer. It was also to not pretend anymore, to be emotionally honest with myself and with others and forcing myself to do some of that work in public, here on this blog. It hasn’t been easy, but with practice I have (mostly) let go of the mask of being fine when I’m not.
In the process, I discovered that pretending takes an unbelievable amount of energy. That by being honest about my limits and how I am, I’ve actually ended up having more energy that I need for things like getting through the day and doing my job. Am I always honest? No. I don’t tell the clerk in the grocery store exactly how I am doing today because I’m aware that there are social mores governing self-expression. I don’t tell my doctor every little thing because both she and I have other things to do than spending the day rooting around in the minutia of my health. Most of the time, though, I tell it like it is.
And then there are the times where I become aware that the lesson isn’t learned quite yet.
Two weeks ago, I noticed an odd swelling between my ankle bone and the Achilles tendon on my right foot. I have no idea how long it’s been there — it didn’t hurt. It also felt as if that foot was turned in a bit more than before and the toes were slightly more bent. I told three people before I got a grip on the freak-out and one of them was my rheumatologist’s secretary when I called to make an appointment.
And then I told no one else, because I feared that if I did, I would disintegrate.
I saw my doctor last week and the swelling turns out to be tendinitis — perhaps related to what must’ve been a flare, perhaps not. Bottom line is that I’ve upped my Humira and realized it’s time to pay more attention to being emotionally honest.
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Oh Lene, this is a great post because I know what you are saying. You always seem to write about something at the same time I am going thru it. Thanks.
I totally get it! I've become more honest and open the older I've gotten. It is a relief to let some of the pressure off to appear better than you are.
((HUG)) Thank you for your honesty, it encouraged me to be honest and not fear other people's reactions. I'm so, so glad we are friends. 😉
I too found I started to feel better once I took the risk of trusting a few people with my true feelings. I thought it was just a fluke or my mind playing tricks on me but what you've just said about the energy it takes to hide stuff really bears out what I was thinking, x
Lene…Once I started reading this post, I just read faster and faster and faster. It struck such a chord in me. i was reading, truth, and I wanted to see the truth, all at once, all right now. You have pulled back the curtain from my most inner thoughts…thoughts I didn't know were there. Very well done. Very thought-provoking.
Great post Lene, it's hard to always tell the truth with RA <3
I so can relate to this post as well. I also have tendonitis in an extra bone I have in my foot, unlike yours might actually hurts and is quite big and swollen.
I am very much prentending daily, and underneath its complete turmoil.
Hi Lene! First, congratulations on your book! Second, my mother suffered from a disease called rheumatic rheumatism when she was a child (in the early to mid 1960s). She has tried to find out what it was, but had no luck. Do you have any idea of what it is, or where we could look to find out? Thanks!
Cathryn – they had odd names for things back then. In the 60s, I was diagnosed with rheumatic fever, which it clearly wasn't. Rheumatic rheumatism is just another way of saying arthritis twice. If you can tell me more about her symptoms, I could try to narrow it down. You can e-mail me at landers5ATgmailDOTcom
Yes! I am lying to most people most of the time, but I have my reasons. As a professional musician I don't want to lose work because other people think I am not able to play. However there are some people that I completely unload on – they hear the whole story all the time. And that's what friends are for!
I've had times I've said I'm fine and then added an aside to some friends I can say it to, *I'm* fine, the body's falling apart, but *I'm* fine. Meaning, too stubborn to let the darn thing boss me around emotionally. And I have no doubt that that's where some of your I'm fines come from too.
After I tell someone I'm fine, I always think to myself, “Fine relative to my own standard”. I'm fine b/c I”m achey from the fibro but not in a ton of pain. I'm fine b/c I'm not lying in bed crying. I'm fine b/c there's nothing newly wrong, no new drug side effects, nothing major going on. That's my definition of fine, even if no one else knows it.
Lene: I love your posts and your honesty — this one in particular. It is hard to be honest because often it sounds like we're whining all the time — but there has to be a balance. Thanks.
Oh Lene, this was so true for me. There are a hand full of folks that I can talk to about my RA – but not everyone. I so get it.
Thank you for writing this.
I've also just bought your book for my Kobo and I'm looking forward to reading it.
I hope you are feeling well.
I thought the duck analogy was terrific but I liked the part of the post about the truth even better. Very compelling images you present there.
And here I am thinking about how to be happy and hopeful but the images I see for that post are getting a little odd…
Annette
Lene, thanks for laying it out there like it is. I appreciate your honesty. I've noticed that after a while, people stop asking how you're really doing. It's hard when you don't personally experience it. One colleague, whose wife has MS, get's it completely and always asks.
Sorry to hear about your achilles tendon. Mine are all shot so take good care of them and hope the increased dose of Humira slows down damage.
Andrew
I used to hide my pain and frustration every time someone asked me how am I feeling… In the past few months I have been feeling better but actually no one believed me… It seems that when I tried to hide it, people knew I did not feel well!
Lene – you are yet again soooo right! I constantly say “fine” whether I am or not even with my friends and family. When I have a bad day I just don't feel like I can complain about it – this would just happen too often wouldn't it? No one wants to listen to that. I have encountered a couple of people who are actually interested in how I'm doing and do ask. Interesting – and somewhat unusual.