Love and Disability: Chronic Pain

26Aug10

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.



24 Responses to “Love and Disability: Chronic Pain”

  1. Spot on. When it hurts the most you don’t want to hear “I wish I could take it all away” You just want to hear someone is there, and that they care.

    Though personally I like hearing “is there anything I can do” because it shows the willingness to help, that you are in charge of what you need, rather than what someone else thinks you need.

  2. Wow- what an intense and personal post, and all I have to say is THANK YOU.
    I am in pain almost every day, and often have felt and feel many of the things you expressed in this post. Is it not easy to say, or think, but this post made it easier just to know that I am not alone!! So from the bottom of my heart thanks for writing this and sharing your pain!

  3. @Unigrrl:

    Yeah, I like hearing that too.

  4. 4 Christina

    Thank you for this post. My boyfriend has several physical and psychological disorders that involve chronic pain, so this was a real eye-opener for me. I think I needed to read this, to be a better girlfriend to him. Thank you! I’ve been guilty of doing the “I wish I could help you” or “I wish I could take away the pain” thing myself. I’ll remember this next time I think about saying something like that.

  5. Yes, exactly.

    I mean I more so ID with the second half of the post, as I have a hard time recognizing emotions in other unless they come out and tell me (ASD), but yes.

    When the Fibro happens, I don’t need people to be all waitress-y and mope-y. If I ask for help with a task, that’s one thing. But to treat me like I am going to break apart any moment does not help, and deprives me of skills *and* self-esteem/self-conviction I need in order to take care of myself otherwise.

    I might always need some help with Daily living due to the executive functioning issues related to my ASD, but that doesn’t mean I need someone else to decide everything or do everything for me. there might even be a number of days where I won’t need supervision to complete things (reminders too, though less frequently).

    short version: you are awesome. thank you. now I’m going to go blog before I end up writing too much on here.

  6. 6 GallingGalla

    I’ve had daily pain for 16 years. I’ve not much to add except: +1 +1 +1 +1 a thousand times over.

    The particular way that ableist society falsely equates mental illness with “laziness”, “just pull yourself up by your bootstraps”, “you should read ‘chicken soup for the soul'”, etc makes it really hard for most people to understand that depression and anxiety *are* chronic pain, every bit as much that caused by neuropathy and chronic injury. I would like folks who are in relationships with people with chronic depression to understand that when (speaking for myself) I say I need to get myself into bed for a while, it’s not because I am feeling sorry for myself, but because I’m *sick*, plain and simple.

  7. I don’t know what to write here.
    Can’t think of anything to say, but just know that I’m here and I care and it might be across an ocean, it might be in only words and thoughts but I’m here for you.

  8. You’ve always been really good at giving me what I need, Ty. I’m glad I have you in my life. <3

  9. 9 brokentelephone78

    Hi, I came across your blog and wanted to let you know that I appreciate you blogging about your pain. (I live with chronic pain, just a different kind.) You hit it right on the money when you stated “you caring is the best possible thing.” That’s taken me years to realize.
    Your blog hit a note b/c I also have family members who have abandoned me, and I’ve also experienced abuse from an ex.

    “Love means you will look out for each other, help each other and be there for each other. ” SO true. The last time I had a girlfriend (I’m a lesbian), she yelled at me the evening I got home from surgery (a surgery where my heart stopped-not fun) b/c I woke her up crying in pain. I haven’t been able to trust anybody or love anybody since and it’s been over 3 years. Ugh. Long story short- your blog cheered me up and I wish I had friends like you. I hope you meet someone who will adore you. Cheers.

  10. Hmmmmm, so I take it my flirtations do much to calm you down? ;D

  11. 11 Sunset

    Very much so. I had this discussion recently. I was diagnosed with cptsd after an abusive relationship. I took the antidepressants for a bit and then decided to stop. In essence I chose to let the pain happen, because I preferred it to what the meds do. The number of people who can’t understand this is shocking. I have met repeated insistence I should go on meds because “it would make me feel better,” despite the fact that I don’t feel better overall on them. “You should maybe try something else” is in the same category – anyone ever considered that I don’t want to go through another 6 months to a year of being fucked up by the wrong meds?

  12. @Lainy: Ha, not strictly. But being there for me does.

  13. 13 Licorice Lain

    Oh, admit it! You want me to hold you, you want me to kiss you. ;D

  14. @Lain: Sure, but it won’t help pain. XD

  15. 15 Licorice Lain

    It is a damn good distraction. ;)

  16. 16 BeccaTheCyborg

    The partner I live with and I both have chronic, painful conditions. This is so spot-on, thank you so, so much for this post.

  17. @Becca: You’re welcome. *nodnod*

  18. 18 zayquana

    I know this post is very very old, but I feel really compelled to comment, so I will. (I have felt compelled before because you rock, but I just cannot resist the urge anymore.) You are so so so spot on with this. I think one of the hardest things for my partners to learn was that the pain that came with having PIV sex (vulvodynia) was not something they should blame themselves for, because I liked PIV even though it hurt/s. And I had to unlearn the guilt I had…still unlearning a little. Although one of my partners is still learning some things about this in relation to my mood disorder. I just keep trying to tell him what does help, and that sometimes it can’t be made better. I also have kind of a weird relationship to pain though, because I experience a kind of pain that, while definitely pain, feels very good to me regularly. So I have trouble painting pain as wholly negative most of the time anyway, and anytime someone has wished to “take my pain away” (especially the good kind) I have told them to fuck off, it’s mine and I own it. It is me like my desperate love for seafood is me. US society is so pain avoidant it’s ridiculous. Which is not to say pain is super-awesome all or even most times, but more that US society would like to deny that pain even exists, ever, and it hurts so many people. So thanks for saying that it’s okay to say to loved ones “Hey, this is my life. Please, if you’d like to help, help, but make sure your help is actually helping, and not hurting. Protip: I am the best person to ask about what would really help, should you be confused.”

  19. 19 Lily

    Thank you. Thank you a hundred times over for writing this. I’m going to send my boyfriend over to read this, because it says everything I’ve been trying to articulate for years. Trying to make it all better, or freaking out because you can’t, or asking me to be ok, makes it worse. And lucky me, since I have an anxiety disorder, that kind of response may edge me toward an attack on top of the pain or sickness.

    Again, thank you. It really helped me to read this, and get a reminder that I’m not the only one who feels this way.

  20. 20 logan

    this is really incredible. it articulates a lot of what I’ve been trying to figure out with regards to mental and physical health and disability (be it my own or others’) so eloquently.

    like, really. I’m a little overwhelmed by how I feel now.

    I wish I could say something more useful but…I think you’ve said it all. would you mind if I linked this on my (not-very-real) tumblr?

  21. @Logan: I never mind a link <3

  22. 22 Jenz...alwayz in pain... Sick of it...

    Your article is great really nice to know im not the only one w/chronic pain… I have had PAD for years a few procedures now and was pain free or pain LESS for a lil while…. Moved to Alabama and have not even found a doctor who will even look at me I have had 6 referals now and an appt in september…. Hate how my boyfriend does/says everything that makes me feels worse I wish he would read this maybe he could be a little more sympathetic… Not always yelling at me cause I dont feel good….


  1. 1 Love and Disability: Chronic Pain « Genderbitch: Musings of a … « Better Disability
  2. 2 Why Pity Hurts More. « Cracked Mirror in Shalott

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