I don't speak for others with chronic pain and fibromyalgia, I am just one voice out of millions. This is a short article on my own experience, but I do believe this will resonate with many of you chronic pain warriors out there!
For those who have not had the firsthand experience of these conditions: there are likely some questions you have about chronic pain, pain patterns, and are curious about the best way to support someone with fibromyalgia or chronic pain. If you do care enough to research this far, you are invaluable, because we as chronic illness warriors need all the support as possible from outside sources. Please read along to better understand.
Here are just TWO simple tips to keep in mind, for those who know someone with pain, to provide better support:
1. The best thing we can hear is, "Take your time" or "Let me know what schedule works for you right now". Fibromyalgia pain or chronic pain is hard to wake up with every day. Imagine the first thing you wake up to for your start to the brand new day is pain (after likely a night of very poor sleep). Imagine what you feel you need from those around you, when you have had a really bad flu. Do you feel you can go from 0-100 immediately? Of course not. That's what it feels like for those with fibromyalgia, it is an all over constant ache and pain in joints and back, fatigue, and poor sleep, even with good habits. For chronic pain sufferers, it is the same realm, with activities taking longer to complete, and starting many days with a "spoon deficit" (energy deficit), just like fibro. For myself, as both a fibromyalgia and chronic pain warrior, my pain is the worst in the morning, with swelling and stiffness in my large joints (hips, knees, shoulders), all the way to the tiny distal joints in my hands. It may be difficult to watch your loved one suffer through pain, or hold their head up high, even though you know they're likely hiding how they feel. Unfortunately, caregivers cannot take the pain away, but instead, make it easier on your loved one with giving them extra time.
2. Provide a time each week away from distractions, to check in and ask how they are doing with their chronic illness, without judgement. When I mention judgement, it doesn't always mean that we are judging someone in a negative way. It's true that unfortunately many fibro patients are not believed. But I am speaking of a judgement that is commonly mentioned in meditative practices. One where we (all of us with chronic illness too can do this!) judge a feeling or experience and think that it should not occur, or get aggravated that it's happening. Actively practice withholding judgement of someone else's pain...fixing it, ignoring it, or minimizing it. Holding space for someone to just admit that they are in a lot of pain, is sometimes the most comforting. Your discomfort with their pain can actually make it feel more isolating. It can be tempting to try and "fix" what is happening with your loved one. And sometimes, advice is genuinely appreciated. Our illness is not all we want to talk about, but it's important that those around do not ignore limitations, and assume the person has got it all under control and doing fine. Acknowledging the struggles and offering space for me to just share is the best support I've ever felt.
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Wishing you plenty spoons,