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.
Affection comes naturally on good days
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.
Showing affection to friends and family
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.
How does RA impact affection & intimacy?
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.
The last thing I want to be is touched
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 is any thoughts of with my husband, sitting next to him with my head resting on his shoulder.
RA flares change my personality
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.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?