Why Accidental Pain Flares Triggered by Loved Ones Are the Hardest
At 6 one morning, our alarm blared out that familiar tone, demanding we wake up. As my fiancé reached across me to turn off the alarm, he unknowingly pressed down on loose hair strands at the top of my scalp, just as I tried to move out of the way. Early morning, bleary-eyed, turn-off-that-infernal-noise actions can easily go wrong and this morning was no exception. As he pushed down on my pillow, I shrieked in pain as he accidentally ripped out several strands of hair. It felt as if someone had lit my head on fire. He immediately pulled back and cried out in anguish that he had hurt me. As a severe pain flare engulfed my entire skull, I felt his strong arms embrace me and hold me close, his voice barely above a whisper, “I’m sorry. I’m so sorry.”
Accidents happen. When you live with complex regional pain syndrome (CRPS), as I do, it feels like accidents happen a whole lot more. Due to allodynia, accidents encompass everything from a paper cut to being hugged. Loving someone with CRPS means having to always wonder if your embrace, your kiss, your pat on their back, even a gentle hand hold will cause additional pain. Loving someone when you have CRPS means having to say, “Please don’t touch me…” and seeing the distress in your spouse’s eyes, and the same feeling reflected in your own.
I have been living with CRPS for six years now and can honestly say that some of the worst flares are the ones triggered by something a loved one does. The flare itself is awful, but what’s worse in the look in their eyes. That look of sadness and fear, that only comes when they know that they caused the pain. It’s bad enough that they have to feel helpless as we writhe in pain normally, but then they know they made it worse… your physical pain is matched by their emotional pain. It never matters that the flare was an accident. Whether it’s pulled hair in a scramble to turn of an alarm or the result of a hug that was too tight, for a split second we see in our loved ones’ eyes — “Oh no, I did this,” “I want to help,” “I’m afraid to touch you” and “I’m so sorry” all jumbled up together in a messy slurry of racing thoughts and emotions.
My fiancé and I cope with these moments by laughing, joking, and always forgiving. Laughing about it may seem too jovial for some, but it works for us. It takes a dramatic moment, and helps both of us break out of the initial shock of the flare. I know my fiancé is a good man. He loves me with all of his heart, and takes such care in how he is around me. I know he would never cause intentionally cause a flare, so for me, it’s easy to joke about it. It helps. In the first few seconds of pain, I feel attacked and ambushed. I want to be angry sometimes, but I remind myself that it’s no one’s fault. Accidents happen.
The next time your child hugs too tight, your sibling grabs your arm to get your attention, or your spouse accidentally bumps into you, causing you to lose valuable spoons, remind yourself that when you are hurting, your loved one is hurting, too.
Take a breath (I like to count to 10). Recognize that it wasn’t intentional, that they too struggle with guilt each time they trigger a flare, and let it go. Look them in the eyes, hold their hand, and say, “I forgive you. I love you. It is OK. I am OK.”
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