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 Rheumatoid Arthritis 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.
Recommended reading:
- How Rheumatoid Arthritis Impacts Lives
- Is There a Typical Rheumatoid Arthritis
- Some Answers for Rheumatoid Arthritis Just Bring More Questions
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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.
Noelle,
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.
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
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.
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.
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.
r
A friend has been yelling that he “just can’t handle this anymore” regarding a whole lot of difficult things happening in his life recently.
I found myself thinking we ALWAYS handle those things and not handling them is just not an option. Sometimes we handle them in a way that is positive or at least useful, sometimes we handle them poorly or handle them by running away from them.
But we always handle them, and in that way we have some choices available of how we choose to handle them.
Well put, Carol. And, even when we run out of options physically, we can choose how to respond emotionally. It can get hard when you are physically more limited than you’d like to be, but the perspective you describe is more “empowering,” as they say. Less desparate.
I have to say RA has changed me as a person. I am not the same person I was before RA. To me this was suppose to be the time in my life where my husband and traveled and took vacations and basically enjoyed life. Our kids are grown. Then little by little it was like pieces of me were changing, I was becoming a different person. I wasn’t the fun, energentic person I use to be. We would host dinner parties, visit friends, meet for drinks at different places and shoot pool. To me RA has changed me dramatically. I can no longer work, I take medications throughout the day. I can’t plan anything, due to the fact that I have no idea how I will feel that particular day. I have become depressed, I have anxiety due to wondering how I am going to be years from now.
Been waiting over 2 years now for SSDI. Been denied then appeal denied now awaiting for a hearing date. Our retirement money is deplinished. We are barely making it money wise. Medications are expensive, my husband’s health insurance wasn’t any good for me. So we have to take out private insurance. Needless to say this is not how I planned on my early 50s!! Basically broke, hurting, fatigued, stiff, showing signs of deformity in hands and wrists……….
Wow, your situation sounds almost identical to mine. I was 56 when I was formally diagnosed. Looking back over the years, there were clearly signs of starting with RA. The aches and pains were minimal; nothing debilitating until two years ago. We were also empty nesters and looking forward to retirement. My husband lost his job, due to the economy, about the time I was needing numerous meds to keep moving. I was also dealing with a mother with dementia that demanded a lot of my time. My stress level was through the roof. I figured the stress wasn’t helping the RA, so I requested my Dr. put me on an anti-anxiety med. Can’t tell you how much better I feel, mentally. I don’t lie awake at night stewing about all my problems or cry at-the-drop-of-a-hat. My mind-set has improved tremendously. I have my deformities, too, in my hands and wrists. Some things are difficult to do. My right shoulder keeps me from reaching over my head. Before Humira, my knees were unpredictable; now I can walk without struggling too much. I thank God every day that He gave me RA and not cancer to deal with. My daily challenges are to not feel sorry for myself; not to complain to other people about my physical challenges; and to live every day with a sense of humor. Life can ALWAYS be so much worse.
Deb, What a great attitude.
Sheila, Familiar themes there – I miss a lot of the social things, too. Hold on. Hopefully, ssdi will come through soon.
As much as I fought the battle to NOT let RA define me I lost. When I was in my early RA years with small children, I was determined that no matter what, I would do everything my friends did plus a little more. I kept telling myself that I would not be limited by this disease. Needless to say I did keep up with my friends (most of the time) but paid a high price for it. Instead of joining in once or twice a week and enjoying it, I wouldn’t miss anything and I would suffer in silence as I dragged myself shopping or playdates then come home, collapse and feel sorry for myself. I did this to convince myself (and others) that I was living a NORMAL life. Quite delusional isn’t it??? As the children grew so did I. I finally cut myself some slack and didn’t feel that my life would suffer if I missed a shoe sale or some other silly outing.
RA still defines me in the traditional sense of aches and pains but I have accepted this as MY LIFE and have learned to love my RA self.
Would I have chosen to have this disease in my life? Of course not. But it does define everything I do in my life and the way I do it. Even with RA, I think I have a pretty good life and wonderful friends who accept me AS IS!!!
Hard to fight something that comes along in the middle of the night like a thief isn’t it?
I guess what matters is how we look at it – you are so right – even if RA draws the lines around us for us to draw in, we can decide what color we will make it inside those lines. I still love life, too.