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The autoimmune response in RA

My Enemy Is Me

Having an autoimmune disease can be a mind-bending experience. The whole time you are fighting the disease, in a way you are fighting yourself.

When I was little, the doctor explained that my immune soldiers were confused and so attacked my joints because they thought my body was the enemy. I learned that my white blood cells not only fought bugs and infection, but attacked my bones. I wanted to send them clarifying instruction: “Keep off! Chill Out!”

The “why” of RA is as confounding as ever

It was hard to grasp sometimes that it was my own body attacking itself. We don’t know why it started or why it continues—how the wires got crossed. But as much as I am trying to quiet the disease, I am also trying to subdue my own body. It’s a fight with myself.

On a day to day basis, I have to think of the disease as separate from me. I have to think about treatments that will stop or slow the process of rheumatoid arthritis. I have to consider the disease, and not “this is me that I am trying to trick.”

I guess it is sort of a mind game that I have to play with myself.

I have to separate the disease, even though I know it is a part of me.

Sometimes it feels like I’m in a bizarre futuristic sci-fi story. I am battling my enemy only to find out it is another version of me. Neither of us can win. Neither of us can lose. We have to fight to a standstill and hope that it allows us both to continue on.

There’s so many other ways that my body acts as my own enemy. For example, when I have fatigue that keeps me in bed. Or when I’m so achy that I can’t exercise. On the one hand I can fight it, but on the other hand sometimes it is better to give in to how I am feeling and get the rest that I may be needing. My body sends me false messages, tricks me into delaying the therapies that I need (like exercise) so that it can win the battle of the day. In this case, who is winning? Or am I just losing?

I try to trick myself.

I sneak in exercise like going to the pool as a “reward” or as taking a break after work. My body sees through it and resists. I feel too tired to swim or my legs are too cold and can’t handle the cooler water temperatures. Sometimes I think it lies to me, whispering in my ear that I need to take a nap instead. I am sneaky and play dirty tricks.

What is an autoimmune disease but a self-betrayal? The immune system eats the body vigorously and ignores the signs that it is doing the wrong thing, hunting the wrong enemy. When I get sick, it gets it right and starts attacking the invading bug. But when it wins, it always returns home.

Sometimes I try to talk with it, reason with it. I tell it that it is causing my own pain. That munching on my bones must have only limited satisfaction. But it is determined and headstrong. There is no listening or understanding. It is like talking to someone who cannot be persuaded because they have already decided.

As much as I am my own enemy, I have to be kind to myself. It may be an internal process run amok, but it is also me. I cannot be harsh to my own body but must try to protect it and care for it as much as possible. My enemy is me, but my defender is me too.

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

  • sarahAIW
    8 months ago

    Trying so hard to remember to be kind to myself. Thank you for this article. I’ve been in a 3 week flare and I feel so burdensome. I’ve been reading these articles and finding hope and light.

  • Kelly Mack moderator author
    8 months ago

    Hi sarahAIW, hoping that you are feeling better. Very glad our articles are helping you. I know that when I am flaring that I get very down on myself–do remember to by kind and loving of yourself. You need some extra gentleness during a flare. Take care and keep us posted. Best, Kelly (RheumatoidArthritis.net Team)

  • jhundley2018
    9 months ago

    All, please consider food as one source of your illness. I am 72 and when I took the Alcat I found out the foods that I am sensitive to which causes pain. Everyone is different. When I had a huge flare after my food surgery, I went back on all acceptable foods. Within three days pain was gone and I was sleeping. I just have to remember what feeds the inflammation. I do exercise, yoga , swim, walk a lot and never stay in bed. Being still makes mine worse. I guess we’re all different. For me carbs and sugar take me on a trip I don’t want to travel. My primary doctor reminded me of that. When I ate right my C-RP dropped from 56 to 16. Now that is not normal but less pain. Hope this helps someone.

  • Nonnie
    10 months ago

    This is so spot on… I also have conversations with my RD, and nooooooooooooo, it does not listen. I even bargain with it at times, and at times I just tell it to relax.. I am having fun. Needless to say, it always gets back at me. This is however such a spot on description of how I also see and experience RD, thank you.

  • Kelly Mack moderator author
    9 months ago

    Thank you Nonnie! Hang in there! Keep on bargaining! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • bones2
    10 months ago

    Great article.

  • Monica Y. Sengupta moderator
    10 months ago

    So glad it resonated with you, bones2!! Thanks for sharing! -Monica

  • kat-elton
    10 months ago

    Kelly- what an amazing explanation of how we live with RA/JRA. I’ve always called my stomach my red- headed step- child because it never behaves! And my right hand is the little one to protect, the left is like the capable first child. You aren’t the only one in a crazy sci- if movie in her head!! Thanks again for sharing such a beautifuly put explanation of our experience ❤️

  • Kelly Mack moderator author
    9 months ago

    Aw, thanks Kat! 🙂 Big hugs to all your ‘children’–good and naughty! LOL! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • lindajumper
    10 months ago

    I have never read a better explanation of this horrendous process we undergo: our bodies literally at war with themselves! You described exactly how I feel and when I try to convey this to…ANYONE…I receive a barely-concealed eye roll or a whaaaat??
    (That includes my husband) Thank you for vocalizing what I can’t! Thanks for letting me step outside of myself and look at the reality with candor and yes….a nice, humorous edge!

  • Kelly Mack moderator author
    9 months ago

    Thanks so much lindajumper! Really feels good that we can relate to these experiences! I am sorry that you get the eye rolls (so frustrating) but glad that we can find support and humor together. 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • tckrd
    10 months ago

    Such a wonderful article. This sounds like my daily struggles.

  • Kelly Mack moderator author
    9 months ago

    Thank you tckrd! Sending gentle hugs. Best, Kelly (RheumatoidArthritis.net Team)

  • Padram
    10 months ago

    Wow ! Wonderfully explained. I live in India, and it is so surprising to see that someone across the continent thinks like I do. I too try tricking myself, saying, : ” I am fine, but I can’t say the same for my body”. I also say that my body and I are like the 2 rails of the railway track. Each can’t do without the other, but they do function as one , the train to cross to another track, the body and I, to function as one unit, though this union is not frequent. LOL.

  • Kelly Mack moderator author
    9 months ago

    Thanks so much Padram! I think your words mean that RA can be understood across the world! 🙂 I like your metaphor so thanks so much for sharing. Hang in there! Best, Kelly (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator
    10 months ago

    This is a really great explanation, Padram! Thank you so much for sharing from across the globe 🙂 ~Monica

  • lindajumper
    10 months ago

    Lol! Another great description I can relate to!

  • MaryB
    10 months ago

    We were taught back in the 80’s to do imagery for Crohn’s flares. Mine is a snake that is sleeping but occasionally wakes up. I tell it to do it’s best, because it won’t work. I have the doctor, meds,etc and it won’t work, but go ahead and try. Within 1-3 days things have calmed down. This was used with cancer patients too. Maybe it will help. Good luck to all.

  • Kelly Mack moderator author
    9 months ago

    Hi MaryB, I really like this imagery idea–thanks so much for sharing! When I was a kid of JIA, I could see my pain in colors with red being the worst and blue the best. I would try to throw water on my joints in my imagination to put out the fire! Thanks for sharing. Best, Kelly (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator
    10 months ago

    This is really interesting, thank you, MaryB! I will try it! Thanks again for sharing, Monica

  • jcullimore11
    10 months ago

    Thank you for the article. Really hit home and describes my life. I am sorry you are suffering with rheumatoid arthritis too, but it’s nice to have someone who can relate to my experiences.

  • Monica Y. Sengupta moderator
    10 months ago

    Hey jcullimore11! I am so glad you enjoyed the article. Please know you can come here any time you need support. All the best, Monica

  • Jeanne Webster
    10 months ago

    Your article is so real! I will share it with family members so they will better understand what I deal with every day.

    Thanks for sharing.

  • Kelly Mack moderator author
    9 months ago

    So glad this article was helpful! Share away and hope it spreads some understanding. 🙂 Thank you! Best, Kelly (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator
    10 months ago

    Thank you for sharing the article, Jeanne! I am glad it resonated with you.

    All the best and please reach out whenever you need to! ~Monica

  • lindajumper
    10 months ago

    Yes, I’m copying this to forward as I write. One each for everyone that has the eye roll thing happening!

  • NPEOttawa
    10 months ago

    You nailed it. And in an eloquent and amusing way. The contradiction of this disease. Am I being strong and compassionate to myself, or just lazy and self-indulgent here in my bed? I’m so tired of trying to make the choices, so I can question them, and then maybe beat myself up for not doing whatever I finally decided I ought to! Sometimes I wish for some-one else to just take over and guide me through the maze.

  • Kelly Mack moderator author
    9 months ago

    Thanks NPEOttawa! Glad I have a buddy in feeling this conflict! LOL! Totally agree that sometimes I just want someone else to make the tough decisions. Thankfully, I have the support of my husband. But still there is a lot of gray area! I try to remember when I start berating myself that I am doing the best that I can and making the best choices possible. Hang in there and thanks for your kind words. Best, Kelly (RheumatoidArthritis.net Team)

  • Richard Faust moderator
    10 months ago

    Hi NPEOttawa. Glad the article resonated with you. I’m the author’s husband and I know what you mean about sometimes wanting someone else to take over and guide you. It is a conversation we have had. We’ve reached a balance where I help and offer advice when asked and when I can, but I’m always cognizant that she has to be able to make the decisions because only she has to live with the results. I am glad I can be that sounding board for her. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • tckrd
    10 months ago

    How wonderful you are?

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