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How can I best support my loved one with his chronic pain?

I am so glad that I found this forum. I've been searching for something like it.

I'm Mel, and I've been with my boyfriend for about a year. He ruptured a disk in his lower lumbar region 14 years ago, had many surgeries on it, and was one of the first in this country to go through disk replacement. He suffered a great deal of nerve damage when his disk ruptured, and as a result is dealing with the chronic pain that ensued.

I would like to get some perspective on how I can best be supportive to him. He is very reluctant to discuss his pain issues with me, and he gets very moody, distant, and withdrawn on his bad days. I then get upset at what I perceive is him "ignoring" me. When I ask how he is feeling, I often get a sarcastic "fantastic", when he is clearly not fantastic. This is all causing a great deal of stress in our relationship. I am a very empathetic person and it's difficult to not let his low moods affect me. I can rationally tell myself that he is hurting and that's why he is withdrawn, but emotionally I'm having a hard time. I give him plenty of space when he is moody, letting him rest, offering to rub his back, etc. but wonder if there is more I should be doing. I love him deeply but his pain issues are having a huge issue on our relationship and I want to know how to help him in the most effective way. I have asked him many times to just let me know how he is feeling, but he feels like he is a burden to me, and if he told me honestly how he felt that I would get sick of it rather quickly. I told him I don't think that is the case, and it should be up to me to decide how much I can handle. We are starting couples counseling next week, and we each have our own therapist. He is finally seeing someone who works with chronic pain patients, particularly with the depression that I imagine is very common, and I'm encouraged that he is finally seeking some help.

So any advice for me would be greatly appreciated. I love this man and want things to work out with us.

Thanks in advance,

Mel =)


  • dilaurodilauro ConnecticutPosts: 9,875
    edited 01/17/2014 - 7:38 AM
    and their spouses or significant others.
    I always tell people that the only answer is true two way communication. Times when you both can speak what is on your mind, what is hurting you, your fears, your worries and the same for the other person in your life.

    Thats easy to say, but can be so very difficult to actual do.

    From the person who lives in chronic pain

    1 They dont want to be a burden. They already feel somewhat insecure due to their limitations.. For a man, that could mean, they feel they can no longer be the strength of the family, the one that can do everything. For a woman, that could mean, they feel that they have failed and let down their family but not providing what needs to be provided.
    But you see, there really isnt much difference between a man and a women

    2 They dont complain or say much about their own pain, because they dont want to sound like they are complaining. Being stoic, handling on their own might seem to be the best approach. Thats why you can get that "Fantastic' when asking how he is feeling.

    3 Fear[/u]. There is a lot a chronic patient has to deal with. They know how they are feeling today, but they look down the road 5,10 , 15 years from now and they wonder what will they be like. Are they going to be that much less of a person, will they even be able to work, will they even still be alive? Fear can cause so much havoc in one persons mind.

    4 How are they going to get by without me. By being in chronic pain, I cant work or at least do my share. So that the burden is on the other person. That places a lot of [u]guilt[/u] on the person living in chronic pain.

    The person living with the person in chronic pain

    1 [u]Fear[/u]. A different fear than what the chronic pain patient has. Here, you are thinking, how are we going to survie, can I do it all? Can I be the man and women of the house?

    2 [u]Anger[/u]. Might seem strange, but after a while, when you start to live with a person in chronic pain you begin to realize you are the caretaker. You never asked for that role, Why do you have it? You want to be able to do everything,.
    downhill skiing, riding horses, surfing, playing golf, etc.... but your other cant, so you can get angry.

    3 [u]Jealous
    . How come he/she doesnt have to do anything. They take their medications, they loaf around the house. I want to do that too!

    These are just some of the dynamics involved with couples that have to deal with chronic pain. There are many more, nothing can be just black and white. I am only trying to touch on those that I can feel and personally know about.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thank you so much. This is the kind of information I need - to get some feedback on how he may be feeling or thinking. I'm sure that being the spouse/partner to someone in pain is a common theme here - I did search and read a lot of posts before posting. I'm just glad to know that I am not alone.

    I think what bothers me the most is that I want to help him, but I don't know how, and he will not help me to help him. I feel that he is freezing me out of something that obviously is a big deal to him. I am trying to stress to him that it's important that he communicates with me about how he is feeling, but he is reluctant to do so. I'm hoping getting advice from others will give me help with how to approach this, and then maybe he will open up more to me.

    Mel =)
  • Also to touch on the emotions you mentioned for me, the partner. I think I mostly just feel sad and helpless. I have a caretaking personality, and I feel a great deal of frustration that he won't let me in, and won't let me try to help. Maybe that's just his way of dealing with it, but it makes me feel sad and isolated from him, and like he is emotionally distant.
  • dilaurodilauro ConnecticutPosts: 9,875
    the one thing I can respond to this, is dont pressure him to let him allow you to help him.
    Many times, under some pressure, people can retreat even further. As hard as it is for you, for now, he is going to be the one to make the first move and ask for help
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • docnukentatzddocnukentatz Posts: 5
    edited 01/17/2014 - 8:13 AM
    Thanks, Ron. I don't pressure him. I do ask if there is anything I can do, and if he says no, I leave it at that.
  • dilaurodilauro ConnecticutPosts: 9,875
    You know what can work best....
    Let him be him and Let you be yourself.
    There will be a common ground where both of you will meet.
    At some point there will be a discussion or action that opens up the line of communication, so that you both know how much you mean to each other.
    Chronic pain is a terrible thing. Most people learn how to deal with the physical aspect, the emotional churn it puts on someones life and their loved ones is much more difficult.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • thoracic spine painthoracic spine pain Posts: 566
    edited 01/17/2014 - 5:59 PM
    Who ever you are I love you already. There aren't many people who care enough to support someone in chronic pain. I am a woman so a guys perspective is great but for me these are the things that I needed.

    I needed someone to just lie down with me and cuddle me - the pain is so scary at times, it's great to have someone else with you who doesn't demand anything but just will lie down and talk to you.

    I needed someone who made me eat properly as when you are in constant pain it's hard to eat the right foods. Shopping is a nightmare not fun , too much bending down, lifting and carrying.

    I needed someone who understood when I couldn't do something even as simple as peeling potatoes as that really small thing was really painful - if I did ask for help I needed it - it was to do with my pain.

    The hardest thing for me was to ask for help as i was very active, fit and independent so if I asked for help even with small things it was because it hurt me to do them. The things I could do like push a lawn mower but not start it. I couldn't look at a rake. So I needed someone who understood that weird things caused the pain and if I mowed the lawn I wasn't immediately better, I could just push but not pull. So I may have looked like I could do stuff but that didn't mean I could do simple stuff. I needed someone to hold the lead taking my dog for a walk cause that was murder for my pain. Watching your body change from super fit and perfect into a complete mess, for me most exercise hurts to much, and I used to be an exercise fanatic so it's something else I loved but had to give in to pain. I loved lifting weights and cycling but I have a shoulder injury as well so still haven't found anything much I can do except walk and I hate walking by myself.

    Has your partner kept a pain diary. One side activity, one side pain level, every 30 minutes for a week. You can then tell what exacerbates the pain. Then you can see what he can do and what he can't no matter how strange it seems

    I needed someone to understand my pain was unbearable at times. You just can't do anything except try and focus on distracting yourself from the pain.

    I needed someone to sit and watch a movie with me so I could distract my mind from the incessant pain, but realise sitting puts enormous strain on your spine so set up the tele for lying down. I have set up my computer for lying down as well. It takes the pressure off your spine normally.

    I needed someone to make me a hot water bottle. I need someone who would make me a cup of tea cause jiggling the tea bag hurt which just sounds ridiculous..

    I needed someone who asked me to write down all the things that exacerbated my pain and do those things for me but also to write down the things I could manage and let me do the things I could so I didn't feel useless.

    I needed someone to plan for me to go somewhere where I could take my mind off the pain and organise stuff so i could get out of the house instead of going stir crazy. I also needed someone who realised that every car trip was agony and who drove gently over bumps as my pain level would shoot out of control and by the time I got anywhere would be in so much pain I just wanted to leave. And that if I couldn't go somewhere because of the pain and even if the other person had put hours of effort into the planning - it would really hurt me not to go - because I had been really looking forward to it and I didn't want to disappoint them either so I would lie in bed crying with the pain. They would get mad which is understandable but make me feel guilty, it hurt me more than them. And going from being fit active and independent to watching you body fall apart is awful.

    I needed someone to understand the pain was there all the time and not assume if I didn't complain I was out of pain. My mind was so focused on controlling the pain it takes over and I was using all my mental faculties just to fight it.

    Sometimes it's easier to write down how you feel. Have you showed him this site as I also needed to blog with people who have had the same pain and get it. I just watched a video on You Tube about guys and why they withdraw and sometimes get angry. It's three little words they are taught from birthto about 12 years old when our personalities are formed and take a disorienting dilemma to be changed 'Be a man, don't cry, don't be a sissy, dry your eyes princess, man up, so guys are taught not to show emotions so they either withdraw and become isolated or get angry.

    I needed someone who didn't look at me like a drug addict when I took my pain meds, I needed the meds for some kind of pain relief and that meds never took away all the pain. I needed someone who respected me enough to realise I didn't like taking them either and not lecture me on painkillers. i needed someone to come with me to the specialists and verify my pain.

    That's just a bit of the list. You need to decide also whether you want to take this on. It's hard yards for both of you especially if one of you is OK. I came to the painful conclusion that i need to be with someone who had spine pain becuase no-one else could understand or cope with it. That is so sad but I have had incessant pain for 8 years and my partner left becuase he didn't get it and wanted someone he could do things with all the time. That's normal and after a while people get tired of it. That's maybe why he is withdrawing - to stop the pain if you leave him - it's so hard to live with someone in incessant pain. my family doesn't get it, my friends don't get it, it's something you can only get if you have been through it.

    So maybe show him this site - ask him to read and blog if he wants - he can talk to people who understand and it might make it easier for you. But he will be scared to death that you will leave him as it is hard to handle so that is probably why he is withdrawing cause it's not fair to ask someone who is not in pain to go through it with you.
  • I don't have much advice on how you can be supportive, but a lot of what Ron has said rings true to me. Chronic pain makes me feel anger. I'm angry that I'm in pain. It's important to recognize that that he is not angry with you, just at his body. When in a lot of pain it seeps into ones dealing with others. I often find myself speaking in an angry tone of voice with a cross facial expression. It is difficult to control that at times. Your partner likely feels afraid, as Ron said. It is scary to think that there is no escape from the pain, no end in sight. He will likely be depressed at times and feel hopeless about the future. Reassuring him that things will be okay and that you'll get through it together may be of some comfort. Try to keep him positive.

    I'm sorry you are going through this. As well as being miserable for the individual in pain it is hard for those who love them, too. Best wishes.
  • My wife has been a ROCK but is human and goes through all the emotions and everyday woes that come along with it. I'm a complainer I guess. She's solid. But does she get it completely? Being well educated medically and in general, still she does not. Unless it's you, you can't. He'll talk when he's ready. You do you.
    Him dat give the bushy tail to da squirrel, give da bobtail to da rabbit.
  • Hi
    I have been suffering with cronic pain for 35 ys and my wife knows the difficulties that come with that,,all I can say is be there for him its hard to try and be normal when pain takes over on a daily basis I have friends that know what I'm going through and accept how things are sometimes just being by ourselves is the best was to cope because its hard to explain pain just let him know your there for him let him do what he can we know our limits and we want to be able to contribute
  • Thank you so much to everyone who responded. Thoracic spine pain, what you wrote was immensely helpful to me. I'm going to print out what you wrote so I can discuss it with him. He knows pretty well what his triggers are and what he can and cannot do. He knows that he withdraws when his pain is severe. He fully admits he needs help on how to relate to others in regards to his pain. I am trying really, really hard to not let it get to me when he's clearly not having a good day, but it's difficult and it takes a toll on me, on my kids, and on the relationship. I hope that he will be more open with me about how he is feeling.

    Thank you again to everyone. I really appreciate it.

    Mel =)
  • dilaurodilauro ConnecticutPosts: 9,875
    You are welcome...
    This is just one of the many avenues that Spine-Health can get into.
    Good luck with your husband.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • |My girlfriend is in chronic pain, and we are newly together sinceNov. 2013. She sent me this link to help me better understand her pain issues. I donot have the pain issues, but |i do care enough about her to notlet the painbe an issue. I do feel bad this is happening to her, she does not deserve it nor does anyone, but I donot hold it against her either. I told her from day one, these issues do not define her as a person and I will not hold that against her. I want to help of course, but realize sometimes I cannot, but I do tend to be overbearring at times not distracting her properly. I get empathetic too much. I know without knowing that this is more than she feels she can handle. However, I am ready to ask for more totake on for her. ||is there a better or worse way to do this?
  • thoracic spine painthoracic spine pain Posts: 566
    edited 01/30/2014 - 7:29 PM
    The most difficult thing I had to do in my life was ask for help. It was really difficult for me as I used to fight through the pain and end up worse afterwards. I ended up calling my sister and she was great but she still didn't get it.

    My ex would say it was my own fault for doing too much - but there is stuff that has to be done an he would blame me but never pick up the slack. Then he would ask me to do things I knew would exacerbate my pain and I just did them as I was tired of telling him what hurt and what didn't.

    Just ask her what she needs help with. Sometimes it's small things and realise she if she is doing stuff, it normally means she is fighting through the pain, and will pay for it afterwards. Everyone is proud - I've noticed a lot of people on this site were danger seeking dare devils and really physically active before this. That's the difficult part for me. I wanna have fun but like outdoor stuff that there is no way I can do now so you grieve for your old life. I don't know how people who have had this since childhood have coped. Don't think I could have.

    Talk to her, organise things for her but ask if she can do them - one guy organised a rock climbing swim in a waterfall for me. I would have loved this before my accident. He had to be kidding - if I fell I was in the middle of nowhere - but he didn't tell me before hand so I had no idea. I had to sit round the bottom, didn't even bring a book, so was bored to death - he honestly thought I would be able to do it or just didn't think.

    Being with someone is great if your pain will not stop. You have someone to talk to which takes your mind off the pain. Good luck hope everything works for you guys - both of you. The main thing is to communicate about what you are thinking, she needs to do this too, it's a two way street - not go around in circles. Be direct - no-one is a mind reader.
  • davrunnerddavrunner Posts: 478
    edited 01/30/2014 - 3:13 PM
    Letting him know it is okay to be himself and if his best coping mechanism is to withdraw and be alone let him know youll be there when he's ready to talk. Also discuss options on what you can do for yourself when he needs to be alone. You have to take care of yourself to be there for him. Let him know tat you care enough for him that your willing to wait until he is ready to open up. Offer to learn massage or get a hot bath with salts ready to help him relax. Approach talking to him about his pain when he is having a good day.
    Those of us who suffer from chronic pain can completely shutdown in order to deal. I know that doesn't help much but after going to numerous doctors and specialist and getting no help it is frustrating to get the question "what can I do to help?" We really don't know as we can't even get help from professionals.
    I admire those who stay with a chronic pain sufferer and provide support when there are easier paths to take. Mel please let us know how you are doing.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • I have been suffering from chronic pain for years, my husband has always been supportive and caring. He has always helped especially with chores when I couldn't them. Besides moral and support, it would be so helpful if you show that person who is suffering from pain that your care and you are there to help him or her

  • its very difficult for the ;;well one ;; to fully understand what the not well one is going through ..you yourself may had had back ache at some time in your life ..believe me the back ache your guy is going through IS NOT THE SAME ..its comparing a cold with pneumonia ...it takes some doing to deal with a person with ill health and not everyone can do it ..even my wife who is a nurse sometimes struggles to deal with my health issues ..as I hold her back , she wants to do stuff and I just can't ..she never says anything but I can ;;feel it ;; ..and that's when problems can start .the best policy is honesty and talk to each other ..I have recently come back from a holiday to tenerife .and before we went we agreed that there would be no pressure either way ..that meant that if she wanted to visit some park and I did not feel well enough to go she went with the grandkids and I stayed in the villa no problem ..but there is that sinking feeling when your other half goes off without you ..I tried to keep up for a few days but even extra meds did not help well they went so far but the pain took over .,,I am 47 and my wife is 50 I have been ill for 17 years 10 of them I have been very bad .and my life has been restricted ..I have noticed a chance in our relationship and I just hope that my health doesn't destroy of marriage ..I have already lost one wife due to my ill health ...its a very difficult situation to deal with .and I wish you the best ..you need to be a good listener and very patient .and when he tells you that he is in pain believe him my pain is so bad that I have not been able to have a sex life or a social life for the last ten years I sleep for two hours then I end up on my recliner every night .this can put a strain on a relationship ..its hard work mell for both parties there is no right of wrong .its just dealing with the problems as and when they come along ...and they will !!
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • docnukentatz said:
    Thank you so much. This is the kind of information I need - to get some feedback on how he may be feeling or thinking. I'm sure that being the spouse/partner to someone in pain is a common theme here - I did search and read a lot of posts before posting. I'm just glad to know that I am not alone.

    I think what bothers me the most is that I want to help him, but I don't know how, and he will not help me to help him. I feel that he is freezing me out of something that obviously is a big deal to him. I am trying to stress to him that it's important that he communicates with me about how he is feeling, but he is reluctant to do so. I'm hoping getting advice from others will give me help with how to approach this, and then maybe he will open up more to me.

    Mel =)
    Just love him. There is nothing we can do to ease the pain. I have been a caretacker for over 3 years now.
    They are in pain everyday. They are not going to complain everyday. Especially a man!
    When he is hurting really bad, just try to make things easier and give reassuring hugs.

    C Rowan
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