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support group for family

schopefulsschopeful Posts: 4
edited 01/02/2016 - 10:26 PM in Chronic Pain
Hi there,

I need help finding a support group for family members/loved ones. My boyfriend deals with chronic back pain, migraines and had a c4-c7 fusion surgery in November. We have regular arguments because I can't understand what it is like living with the pain like he does, God help me, I do... but there are days I break down and I just miss him... we miss days, sometimes weeks because of the pain. He tells me not to take it personally, and over the last 18 months, and especially since his surgery I have come to understand more. BUT we had an argument over New Years because we missed it. We didn't get to spend it together. I broke down and told him he chooses his pain over me, which isn't true... but it hurt him and I can't make it better. I will never fully be able to understand what it is like for him. But I do know what it is like to be content just sitting by his side, to miss him so much I randomly burst into tears during the day, and yes, sometimes I break down and take it personally. I keep all my feelings locked inside and then I erupt, that's not healthy either. I want to support him, encourage him and be a safe place for him.. and I need a place where I can go where people understand what it is like to be on my side of the fence, a safe place to vent when it feels personal and I'm frustrated because I just want to hug him. A place to go when it's New Years and I want to spend it with the love of my life and I can't. So, any suggestions on how I can be a more supportive and understanding girlfriend, or where or how I can find a local support group would be very much appreciated.

schopeful you might find this link helpful

Open Letter from a Person with Chronic Pain


  • LizLiz Posts: 7,832
    edited 01/02/2016 - 10:25 PM
    Please take the time to read this post and refer to it when you have questions

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  • SavageSavage United StatesPosts: 5,476
    A support group sounds like a great idea.
    You say you miss him every day, and that may be a part of grieving the man you fell in love with...as his chronic pain can not help but change him somewhat.

    Are you worried as a girlfriend that this may be too much to handle as a wife?
    That would not be unusual, but something to think about.

    Talking it over with someone in similar circumstances may benefit you hear shared experiences.

    You may want to talk with a therapist one on one for a time. ..not a forever thing.
    You can get some new ideas on coping...and mostly how to best take care of yourself.
    You said you're crying and irritable and if nothing else, you'd have objective support to help you best cope with your feelings.
    When you know more about how you're thinking, you may want to include your boyfriend into your sessions.

    You guys may be able to learn good communications that doesn't involve you stuffing you're feelings until they unexpectedly pour out.

    It was good of you to write here.
    We care for those suffering pain in a way unbelievable to anyone without this experience.

    We also care for the loved ones, and realize just how difficult it can be to watch those who suffer.
    We want our loved ones to take care of themselves, also!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • schopefulsschopeful Posts: 4
    edited 01/03/2016 - 2:53 AM
    Thank you for your kindess. I do think a support group would help, I just can't seem to find any beyond dealing with cancer, suicide and alcoholism. :(

    I never thought about the fact that I may be grieving.. and I think you are onto something there. I wasn't made aware of all that J suffers until months into the relationship, by that time I was invested and in love, and love doesn't bail when things get hard. I guess I thought with time the Dr's would figure out a better combnination of pain pills, or that he would feel better after the surgery, I thought after a year and a half together he would want me with him, even when he is in pain... and that is what we argue about. I feel like he doesn't want to see me, and that it is a choice he makes, as I am perfectly content if all I get to do is sit beside him, I just want to be in his presence. He, on the other hand is tired of telling me it is not a choice, and that when he disappears for days it is because the pain is so intense, and that sometimes he sleeps through entire days and other times it is all he can do to get up and walk down the hall to the bathroom. As a "healthy" person, this is very hard to comprehend and not take personally, and he is tired of explaining it to me. He is hurt by the fact that after all this time I still don't understand. So yea, I think you are right, I think I may be grieving.

    As for being worried about being his wife, no, I am not worried about that at all. I dream about it. Honestly I think that would help both of us. My biggest and really, only complaint is going without seeing him... missing out on getting to share things that happen, or spend holidays together, if we were married, I would see him everyday, I would wake up and have the chance to see him, and I'd fall asleep and he'd be next to me... there wouldn't be the fear that something has happened and his parents are going to call or text me saying he's shot himself (he likes to joke about this) or that he's fallen and is hurt. He couldn't be too embarrassed or prideful to let me see him because it would be OUR home.

    I have looked into seeing a therapist but worry they will tell me the realtionship is unhealthy and that I need to break it off, that is false and I will not give up, I need a place to go that is safe, and I'm worried that a therapist won't be.. and I think I'm disappointed with myself. J is the one who is in pain, who am I to complain or need anything.. I feel guilty that this is hard for me.

    I love him, I'm committed, and I want a future with him.. whatever that looks like. I just need to learn how to miss him better or something...
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