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Identity: Rheumatoid Arthritis

When I was diagnosed with rheumatoid arthritis, it was something that I was expecting. Both my mom and my maternal aunt had been diagnosed with autoimmune diseases many years prior. The symptoms, complications and treatments that they had struggled through were very real to me, and I had always feared that the diagnosis would become mine too.

My diagnoses and my journey

First came fibromyalgia

In 1994, I was diagnosed with fibromyalgia. This disease would raise its ugly head periodically, and keep me down with fatigue and pain. Most of the time, I was able to keep working, but every once in a while, it would put me in the bed with debilitating fatigue and all-over pain. So, when I began having a different kind of stiffness, fatigue and pain in 2011, I began to wonder if an autoimmune disease was beginning to emerge.

Then came my RA diagnosis

It was not until 2014 that I was diagnosed with rheumatoid arthritis. I had finally reached a doctor who would do the testing and recognize the symptoms well enough to actually diagnose me correctly. Having sero-negative rheumatoid arthritis makes the diagnosis a little more difficult, and some doctors aren’t willing to jump to giving a patient a diagnosis of an autoimmune disease without clear-cut blood markers.

It became my identity

Once I was diagnosed and made it to a good rheumatologist, I wanted so badly to find a treatment that would relieve my symptoms. But as much as we tried, nothing seemed to work. My desperate quest to find relief consumed me; it was all I could think about and it was all I could see in me. It became my identity. My thoughts and feelings centered around my disease. My perception of what I could and could not do came from my understanding of my RA symptoms and what they could do to my body.

Depression was constant

As my symptoms continued and no treatment brought a decrease in my disease activity, depression became a regular companion to my RA. Most of my days were spent on the couch in front of the television in pain, lonely, and frustrated that I couldn’t do the things I used to do. I prayed and asked God for healing, and went to others for prayers for healing, but the healing never came. New and different treatments, giving myself injections, and searching through the internet and books to learn more about RA were part of my new reality for the first few years. All I could think was, “why does it have to be this way?” and “will I ever be normal again?”

I had to change this identity that consumed me

Through questions and prayers, heart-to-heart conversations with friends and my husband, and finally being tired of feeling sorry myself, I came to the realization that I had let my identity wrap itself around my RA. I could not separate myself from my RA. In my determination to find a treatment that would make my symptoms disappear (or at least lessen) I had lost who I was and always had been. I had to let this go. I had to change my view of myself; I had to see me and what I could do, not what I couldn’t. I began to change my prayers from “why and please” to “thank you.” I thanked God for what I was able to do, what I could use to help others, and give over my quest for the “right treatment” over to God.

Changing my view made a world of a difference

As my view changed, my depression lifted. I could see myself as more than just a disease; I was a person—a spirit, a soul and a body—who just happens to have RA. While my spirit and soul have lifted, my body still suffers. I will not minimize the effects of RA and the insidious nature of it. I recognize that it can put me down at any time of day or night, but it doesn’t have to rule my life. It doesn’t get to define me. I still get to decide that!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cynthia Ventura moderator
    1 week ago

    Amen! What a wonderful post with great advice JanetEJ @janetej. So happy you are doing well. Prayers and gentle hugs.

  • JanetEJ author
    1 week ago

    CynthiaV, Thank you so much! Hugs back at ya!

  • Daniel Malito moderator
    1 week ago

    @janetej Changing your view due to life’s circumstances is no easy feat. It takes work everyday, and I’m glad to hear that you were able to climb that particular mountain. It’s amazing and something to be proud of! Keep on keepin’ on, DPM

  • JanetEJ author
    1 week ago

    Daniel, thank you so much! It is certainly a daily walk. Best wishes!

  • Lawrence 'rick' Phillips moderator
    1 week ago

    RA can steal many things, and that should not include our identity. Depression is as difficult as RA and the two together are especially difficult. I admire your story. It is oddly familiar to me. I believe it has played out at my house and in my life a few times. 🙂

  • JanetEJ author
    1 week ago

    Rick, thank you for responding to my story. It is very much a daily walk with some easier than others. Best wishes!

  • David Advent moderator
    1 week ago

    Hi @janetej,

    I loved reading your article. It resonated so strongly with me and my personal experience, too. I was diagnosed with RA a year ago at the age of 21, and it truly threw me for a loop. I had no idea what to do and was horribly depressed. But, one day, something just clicked, like you mentioned: “I had to let go.”

    Things with RA are still difficult but this change in perspective is crucial. Thank you so much for sharing your experience!

    Wishing you the best,

    David (RheumatoidArthritis.net Team Member)

  • JanetEJ author
    1 week ago

    Thank you David. RA can certainly throw us for a loop, but it is something that we have, not who we are. While I knew this, it took much longer to work it out in my daily life. For me, God gives me an identity that nothing can take away. I’m thankful for people who can understand my struggle and help me through it. Best wishes to you!

  • Jo J
    2 weeks ago

    Even I’m bored hearing me talk about my RA! I’m trying to find topics and anecdotes to share when I am socializing that are not at all health related. I’m not denying my RA, and I definitely still need my peeps that I can go to and discuss my RA. I just want to find a way for it to not be the top of my consciousness for conversation. I think it’ll help my view, attitude and perspective?

  • JanetEJ author
    1 week ago

    Hi Jo J! Thank you for responding to my article! Sometimes it is quite difficult to try to talk about anything else but what is right in front of you all of the time; especially, when it is so painful and such a struggle on a daily basis. Remember who you are without RA, what interests you, and what you like to do. Best wishes to you!

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