Monday, July 20, 2009

The Rheumatoid Arthritis Self-definition Fairy

Does Rheumatoid Arthritis define us?

Recently on the blog, Noelle wrote about a warning from her nurse friends to not allow Rheumatoid Arthritis to “define” her. I could not respond to Noelle adequately in the little comment box. Don’t you feel cramped in there?

Here’s Noelle:

"A couple of my nurse friends have told me to not allow the RA to define me. I haven't totally wrapped my head around that concept and how I go about doing that, but this week I think the RA is calling the shots."

Actually, I already had an outline for a post on “defining ourselves” squirreled away in my files. So, change of plans for today. Let’s go ahead and face down one more phantom!

What or who defines us? Does RA hinder or help the matter?

Let’s look at it.

Defining oneself is a primary psychological occupation during youth. I have loved watching my own nineteen year-old to do that. Even her mundane choices are important as she is defining herself. She picks out everything from favorite foods and clothing styles and music to Bible verses to help her identify herself. Yes, her values are reflected by her choices. But she is also marking out a plan for who she wants to be and how she will be identified by others.

When we are young, we explore and choose what we want to use to define ourselves. I have enjoyed watching my daughter do it because it triggered memories in me of making those choices. It is an empowering feeling of youth: that you can define who you will be. It is an enjoyable time. Our goals tend to be ambitious and fearless.

During the next stage of life, the wonderfully productive middle years, mostly we define ourselves by what we do. Our occupations and responsibilities and our influence equal who we are. At least we think so. This is legitimate, too, in some ways.

But there are drawbacks. Eventually, as we near retirement, most of us must re-evaluate those definitions once again. Ever heard of a mid-life crisis? Or empty-nest syndrome? What are we apart from our accomplishments and qualifications?

If things go well, we generate more significant ways to define ourselves when we are older. Life eventually forces us into that. We learn to emphasize more mature aspects of our character and preferences. I think it is similar in some ways to the first stage because there is less focus on performance.

RA-ers are blessed. We get a shortcut to the subsequent stage of self definition. It’s like the self-definition fairy comes one night and makes a trade. You know how the tooth fairy trades baby teeth for a quarter? Well, the RA fairy just takes away many of those things which we do that we think best define us. One day we are running our lives just fine and then… poof! Gone.

What are we when we no longer do the things that defined us? When there are no more masks or props to help us define ourselves? We are whatever it is that we truly value. We are whatever it was that motivated us to do the things that we did when we could do them. We are our character and our spirit.

Actually, Noelle, a woman said that to me too once. It was when I was first diagnosed. And it has haunted me, too – until today. Next time someone tells you not to let Rheumatoid Arthritis define you, tell him about the RA self-definition fairy.


Noelle said...

Thank you, Kelly, for your post. I really appreciate the way you explained it. I must say that I am upset with the self-definition fairy at this moment. :/

I think what has been the problem with me this week stems from having to choose what I can do in a day. My 32 year old daughter just got out of the hospital today after 4 days in the cardiac ward. It looks as though she will be fine, but she will need to change some medications that seem to be irritating her heart and making the vessels spasm. It was quite a scare. So, I have been spending almost all of my time at the hospital (which is a different hospital from where I work). Everything in me has been focused on staying with her, "being there" with her, and talking with doctors, resulting in me not taking care of myself and resting as I should right now. My body & brain are tired & fuzzy (I guess due to the methotrexate & coming down off of steroids). Part of my self-definition is to be a good parent, and to be there for my children. It is something I truly value. Will there come a day when I don't need so much rest? At some time, will I understand my limits? My character and spirit are here, but they seems to be quieted at this time by fatigue and pain.

Kelly said...


I am so glad she is okay!!
No one can pretend to understand how hard this must be for you.

Of course you did not ask for this to happen to you. Of course you want to do everything for your daughter. You ARE a good parent already!

Obviously, you are not defined by what you could not do, but wish you could do! We can all hear your heart: to support and care for your family and your patients. Your spirit is beautiful. If we can see it, so can your children. God bless you, Noelle.

Anonymous said...

Kelly, I'm stopping by for the first time and thought you did a great job with a question that is constantly on all of our minds.
I was diagnosed at 11 years old, a month before 7th grade, and the beginning of my "first stage of self-definition". So, there is no doubt in my mind that who I am and how I am looked at is no doubt in huge part due to RA. I think it depends on where you are in life when you get it. For me, I don't know what I was like without it, because there was no "defined me" before I got it, just a cute little girl bopping along the golden road of childhood. As I grew into a teenager, it became the decider. It decided what I could do, what I could wear, eat, when I could hang out with friends, etc. In that way it defined who I became. Wouldn't it be interesting to know who you would be if you never got RA? -robin

Angie said...

It's amazing how much I had to change who I am to accomodate RA. It's an odd sort of thing because technically, I own this disease. It's mine, right? But it's like the rest of my possessions. I can't dictate how RA should act. I can't control the flares, tiredness, and pain and tell them to go. By some miracle, I am now controlling it but how long will that last? Will RA stage the take-over of yet another drug? For 37 years and 10 months I had always known who I was. But since that first symptom dropped by and RA started to rear it's ugly face, I had to redefine my self over and over. That's a lot of change in less than a year. I started to have an identity crisis! And here I am, still redefining. I think I can honestly say that who I am as a person is going to be a work in progress. A constantly changing story. I'm not sure I like that much change.

MissDazey said...

I was recently having a major melt down, both physically and mentally. I thought I just couldn’t handle this anymore. Then unexpectedly a memory of another bad time flickered across my mind. I mean BAD TIME. That was also circumstances beyond my control and changed my whole life. I started writing down how many of these things I’ve lived through and survived. Gee, I am stronger than I thought.

Kelly you are so right that, the RA Fairy does give us a short cut to our true inner person.

Anonymous said...

First I should say that I don't have RA, but I have ME/CFS and EDS and a laundry list of other acronyms which disable me so I think the effect in terms of self-definition is very similar, if not identical.

I first got sick when I was 19, in the middle of University. I had dreams of finishing my undergrad studies here in Australia and doing postgrad work in the USA in the field of cognitive science/artificial intelligence. I was really good at it! I'd finished almost 3 years worth of Uni work in 2 years and I was loving the challenge.

Then I got sick and never got well enough to go back to Uni. Managed after 4 years or so to finish my degree via correspondence but it was a huge struggle. I've never been able to work or support myself. Feel in some ways that the disease has never allowed me to be an adult - never supported myself or had a carreer, never bought a house, never married, had kids, etc. I know lots of 34 year olds haven't done many of these things yet, but I probably never will.

In other ways I feel I'm much older than 34 - stuff I've been through means I can be pretty damm wise about some things. Nothing specific to me - it's a going-through-tough-stuff attribute I think. And of course physically I feel decrepit and useless. Realising my 89 year old grandmother is more able than me is challenging!

I used to think a lot about the Ricky-who-never-was who didn't get sick. Wonder where she/I would be and such. I don't do that now, at least not much. I just be me.