Love and Disability: Chronic Pain
We don’t like seeing those we love hurt.
It’s a completely natural response. We’re tied to these people, be they family, friends, partners, whatever. Our happiness and theirs are linked. Closely and tightly. When they hurt, we hurt for them. When they smile, we feel happy too. When they cry, we want to cry. When they laugh, it brings a smile to our lips too. Love is one of the strongest accentuations of empathy a person can have. And one of the strongest bonds a person can have too.
It’s not unusual for us to want to spare our loved ones pain and/or suffering. Parents may be reluctant to let their kids make the mistakes they need to grow from, cuz those mistakes hurt. Lovers may be upset when a partner did something that risked injury or harm for them, whether it was necessary or not. Friends want to help friends feel better when they hurt. This isn’t just common, it’s usually a good thing. Love means you will look out for each other, help each other and be there for each other.
But sometimes the instinct is taken in the wrong direction.
What do many of you do when someone you love is always in pain? How do you react to twinges and aches or emotional suffering that you can’t salve, that you can’t wipe away? Many lovers, friends and family will internalize it as their fault, or withdraw cuz it’s painful to watch their loved ones hurt, or search far and wide for some way to “save” their loved one from what they deal with. People who want anything but their loved one to become used to pain, to see it as a normal part of their life. And there are many disabilities out there that involve chronic pain. Both emotional and physical.
Not all disabilities involve pain, by any means. But this particular post is concentrating on it because there’s a lot to write about it.
I’m so used to pain now I can move around and essentially care for myself when I have a migraine, IBS attack, my legs and feet act up or my depression hits. Even as I’m falling apart, I can drag myself to bed and sleep so that I’ll be better in the morning, or activate the light therapy thingie my friend gave me. When my feet hurt so much I can barely think, I’ll still often keep walking till I can find a good place to sit down. When my IBS attacks hit their hardest I can instinctively find a bathroom, even though the pain is so much that I can barely even walk. When my migraines hit, I stumble, semi conscious, to the kitchen and make strong black tea and find the painkillers in my desk for just that purpose. Often while blindfolded to keep the light from making the pain worse.
My most recent ex always told me that they hoped deeply that I never reached that point like they had with their disabilities, because it’s one of those awful depressing things that no one wants to happen to a loved one (which I think is why they didn’t want me caring for myself when I was in the midst of catastrophic migraine or depression spike). They hated seeing me in pain, sometimes felt responsible and wished they could help. And before I got a bit better about this stuff, I had the same instincts with them. But that’s the wrong instinct to follow.
It was inevitable that I become accustomed to pain. I’m glad it finally happened. Because no one will take care of me now. I’m single, abandoned by my family, with a housemate who’s never home and friends scatted to the four winds. I have to be able to stand up and find the painkillers that’ll help me during a migraine, back failure or leg failure or force myself to go to bed when the depression spike hits or carry myself to the bathroom when the pain is too strong to walk from the ibs. Or I’m fucked. Sheltering me like that just made this harder. And sometimes, I can’t do that stuff and just kinda lay on the floor or couch for a while trying to recover.
It isn’t something that can be removed, this pain. Beating yourself up about it is not only not helping me or other people with disability, it makes many of us feel worse and blame ourselves for how you’re hurting (since you’re clearly in pain cuz of our pain). We’ve accepted that this isn’t just going to go away and partners have to as well.
I’m not asking partners, family, friends to stop caring. Quite the opposite actually, you caring is the best possible thing.
What I am asking for is for you to realize what it is you can do and accept that what you can do is often exactly what we need. The pain doesn’t go away. But it has always been worse for me when alone. When isolated. When I had no one there who cared about me, who could hold my hand as I cringed or hug me as I cried. Or even worse, when I had people there who ignored it or yelled at me for it (like my abusive ex, who felt their pain needed to be the center of attention always). My disabilities are not something for you to “save me from” or “endure”. My disabilities are a part of me. And what I need is for you to love me. To be there for me. And many of us operate that same way. If only partners, family and friends (and all those blended among those categories) realized that holding me and letting me know you’re here and care is worth a thousand, no a million, “I wish I could cure you”, “I wish I could take this away from you”, “I’m so sorry you’re hurting”, “Please be okay?” and utterly negates the phrase, “I wish I could help you.” You can. Please do. Please recognize what it is that is needed and don’t project your false impression of my needs on me.
I imagine it’s painful for the people who care about me to hear about this but it’s a part of my life. Pain is. I am never free of it. And there’s tons more people like me.
People need to accept that. Sometimes I simply can not do things. Sometimes I get up by sheer force of will and drag myself crying to where I need to go and do what I need to do because I have no other choice. Sometimes I will need your help but never your pity. You can’t “cure” it, no matter how much you love me. You can’t spare me from it, no matter how hard you try. And if you blame yourself for it, you only hurt us both.
And I don’t ask you to. I just ask you to be with me. So I won’t be alone while I hurt.
That’s how love and disability work for me.
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Tags: disability, love, pain