MINDFULLY MENDING MARCH SUGGESTION: ask someone if they know what they need ... ask yourself if you know what YOU need!
Chronic illness and/or chronic pain can be lonely and isolating. Unless you live it, you can't ever truly understand it. And even if you do live it, you can't ever really know what anyone else's pain experience is. I find that I am constantly comparing myself to people who are "worse off than me." Though I don't even know if that's true because I don't know what their pain feels like in their body. I only know mine.
I think the biggest struggle is that people don't know what to say and I don't know what I need people to say. So how can I seek support when I have no idea what that support would look like?
This weekend was one of the worst I've had. And there's only so many times I can say "it hurts". I can cry and curl up and hate the world. But I don't know what I need. There isn't anything that can help the physical pain. So how do I seek support for the suffering?
Also, no one knows what to say to me. "I'm sorry it hurts" is usually good. But in the depths of despair it feels dismissive. "I wish I could help you" expresses empathy, but adds to the hopelessness. "Can I do anything" makes me feel guilty. "What do you need?" Makes me feel like if I only knew what I needed, things would be better.
I think when someone is isolated because of pain, what they really need is someone to make them feel like they matter by bringing them tea, or offering to make lunch, or texting a funny meme or a loving meme (as long as it doesn't say something like "whatever doesn't kill you makes you stronger" because in the throws of agonizing pain that is the LAST thing you want to hear!)
Acknowledge that your friend/family member/colleague's pain is real. Check in. Text them once in awhile and say how's your pain today? Or how many spoons do you have today?
Take the extra few sentences when extending a social invitation to say, if you have to cancel I will understand and won't hold it against you. And invite them to do something even if they canceled the last 6 times.
Find out if they want company in their pain. Maybe they need to be curled up in a ball on the couch but want to watch a movie with a friend. Maybe they can't walk that day but could play a game.
I think the key is that so often we don't know what to say to each other and in our attempts to be kind or understanding we say things that come across as dismissive or clueless which translates to hurtful. eg "I hope you get well soon" "hang in there, it won't last forever" ... those words are said out of kindness but invalidate the CHRONIC part of chronic illness. There may be good days, but it WILL last forever. And there IS no getting well.
Learning to truly care for one another means paying attention to the small details that connect us.
You may not know what it is like to live with daily wide-spread pain. But you have experienced intense pain and you can imagine what life might be like if that never went away.
You may not know what it is like for the people around you who can't help you with your pain. But you have watched someone in pain before and you know how helpless it feels that you can't fix it.
Be kind,
To yourself too,
xo
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