Maroon hand pushing the face of a male figure with horizontal lines behind him

Too Close for Comfort

There are many things to hate about rheumatoid arthritis/rheumatoid disease [RA/RD]. There’s the pain, immobility, and crippling fatigue. There’s the cost, time, discomfort, and side effects of medical treatment. There are the unpredictable flares that sabotage plans, to my frustration and to others’. There’s the feeling of being held back, restricted, corralled by my own body. But perhaps the thing I hate most is having to hold my loved ones at an arm’s length.

Fortunately, my disease activity is moderate to mild most of the time. More days than not, I am not actively fighting a flare, and I am able to go about my life. That isn’t to say that I am pain-free, as I am never pain-free, but fortunately, my medical and self-care regime are effective enough to allow me to have more good days than bad.  On these good days, when the discomfort is mild enough to be pushed to the outskirts of my focus, I am an affectionate person.

I like to hug my good friends at hello and goodbye. I cuddle with my kids every morning and evening and hug and kiss them in between. I love being physically close to my husband. In both my own family of origin and my husband’s, embraces are common. Affection feels nourishing and energizing. It is in my extroverted DNA to be close to others.

Until a flare, that is.

During flares, RA stops me from showing my affection

When I’m in a flare when my joints are screaming, my muscles are tight, and even my skin feels sensitive, the last thing I want is to be touched. On a bad day, my body is already in so much pain that every touch, bump, or squeeze is amplified. My body becomes incredibly vulnerable, and contact that would usually feel affectionate is instead agonizing.

Even the prospect of being touched puts me on edge. I tense up when my husband or children come near me. I shrink away from a full embrace from a friend or relative, opting for a side-hug instead. I hold my hand up in a wave to pre-empt a handshake.

And the only intimacy I entertain any thoughts of with my husband is sitting next to him with my head resting on his shoulder.

Personality changes during an RA flare

Like a malevolent wizard, RA/RD puts me under a spell, transforming me from a talkative, affectionate, energetic person to a silent recluse. Luckily, my flares are never permanent, and eventually, my true nature is able to shine again, like a frozen figure coming back to life. For days afterward my children, only six and eight years old, will ask, “Are your joints okay, Mommy? Can I cuddle with you?” It simultaneously hurts my heart to have times when I must distance myself from them and fills my heart to see how considerate they’ve become.

Each time I break free from the spell of RA/RD, I feel grateful to be myself once again. However, unlike any fairy tale, the wizard is never banished, and the next wave of transformation is always on the horizon. My only option for happily ever after is to drink in every cuddle, kiss, and hug that doesn’t hurt, drawing it deep within my inflamed bones.

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

View Comments (13)
  • Susie Que
    2 weeks ago

    When I’m in a flare my ability to talk loud is gone, people will ask me to speak louder, I just tell them it’s not in the cards right now. I avoid places where people bump into me because it’s so painful, I cringe if someone wants to shake my hand. I’m getting better about telling people in advance if I’m flaring so I don’t have to tell them no hugs.

  • Tamara Haag moderator author
    2 weeks ago

    Hey Susie Que,

    Thank you for sharing a little bit about what you go through. As you mention pain impacting your talking, I thought you might find you can relate to this article: https://rheumatoidarthritis.net/blog/pain-and-silence/. It’s about not having the energy/motivation to speak that I have when I’m having a good day.

    Wishing you comfort,
    Tamara

  • lanikai13
    3 weeks ago

    I have this difficulty in my yoga practice. One of my teachers is always wanting us to hold hands. She comes uo to me and will adk, why won’t you do this?

    She knows I have this disease… even my Yogi teachers don’t get it!!! Makes me sad that no one ever has understanding and the expectations are sometimes more than I can handle!

  • Lawrence 'rick' Phillips
    3 weeks ago

    Hi lanikai13:

    I admire you doing Yoga, I took Yoga for 5 weeks. But I had to go stop. Turns out snoring in class is frowned on.

  • Tamara Haag moderator author
    3 weeks ago

    Hi lanikai13,

    Oh, that is frustrating! You are trying to do something to help your body, and you’re still running into it there. I once had a yoga teacher I had to stop going to because she was very judgmental when I wouldn’t try every diet or alternative therapy she recommended. I told her that it takes a lot of energy to try each new thing, and she replied, “Well it takes a lot of energy to be in pain all the time too.” That was the last class I attended with her, as I really need my self-care activities to feel . . . caring!

    Have you tried explaining to her that it hurts to hold hands? I know that explaining our vulnerabilities to others can also require energy we don’t have, and there are certainly times I don’t explain because I can’t summon the energy. And of course, sometimes people take in our explanations and sometimes they don’t.

    Give yourself a (gentle) pat on the back for going to yoga, and know that while many people don’t get what it’s like to live with RA/RD, we in this community really do. Please continue to reach out any time you want to share a question or experience, or if you just need to vent to people who understand.

    Wishing you all the best,
    Tamara

  • KB253
    3 weeks ago

    I feel you….

  • Tamara Haag moderator author
    2 weeks ago

    Thanks KB253! It does help to know we aren’t alone in these challenges and our responses to them. Wishing you all the best, Tamara

  • Lawrence 'rick' Phillips
    3 weeks ago

    I recall three days after my third dose of Remicaide. I woke up on a Sunday and went skipping around the house singing I am free from t the rock opera Tommy (do not even pretend you know what that is). It was amazing the freedom not the rock opera.

    The feeling was remarkable. I have seldom felt it since. Nothing is so cool as that glimpse of of wonderful, except maybe a good hug.

  • Tamara Haag moderator author
    3 weeks ago

    Hey Rick,

    Are you suggesting that I don’t know Pinball Wizard?!! 🙂 Oh, the highs of a good day, or even a good moment. This disease is so challenging, but I will say that it has shifted my perspective so that I don’t take as many things for granted.

    In (The Who and RA/RD) Solidarity,
    Tamara

  • Tamara Haag moderator author
    2 weeks ago

    I love it, Rick! Thanks for the smile this thread gives me. 🙂

  • Lawrence 'rick' Phillips
    3 weeks ago

    Oh Tamara you impress me. You bet I was speaking of a PinBall Wizard.

    He’s a pin ball wizard
    There has got to be a twist
    A pin ball wizard,
    S’got such a supple wrist

    Hey I think Ann Margaret was not really believable as the mother. But as we know Elton John rocked as the PinBall Wizard.

    I bow to your knowledge of really bad movies, but great songs

    In (The Who and RA/RD) Solidarity for certain.

    rick

  • Daniel Malito moderator
    3 weeks ago

    @tamara We keep fighting that good fight until we can’t any more, don’t we? Rinse and repeat and hope we get a break. Great post. Keep on keepin’ on, DPM

  • Tamara Haag moderator author
    3 weeks ago

    Thanks Daniel! Yes, rinse and repeat – that sums it up! All the best, Tamara

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