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Helping other people to understand

Wondering if anyone can give me any tips to help other people to understand chronic pain??

I had revision discectomy 2 months ago and still in a lot of pain and struggling to walk without stick/splint. Had chronic pain for 4 years since failed discectomy.

I've read quite a few posts where people have talked about feeling down and isolated and not having support from family/friends. I'm lucky in that my family are great and I have some really close friends who get it and I'm so grateful to have them in my life to support me. However, my partner's family are a real problem and their negative attitudes towards me recently are starting to cause problems in my relationship as they think I'm making it up/making a big unnecessary deal of how much pain I'm in/ dont think I'm really in pain, am addicted to medication etc. When I first had a back problem, they talked to my partner about leaving me and recently have done this again following my operation. They don't want him to be with someone who is in pain all the time. He's told them he wants to be with me, but I'm so upset they are saying this.

I've spent the past 2 months worrying about their issues with me and trying to help my partner to understand everything I need (physically and emotionally). He's always understood and been great, but since second failed op, he's siding with his parents' views more and I've had hardly any support from him. My parents had to move in after the op to help with stuff as he wouldn't help and found it too much of a strain on him.

I've had insomnia for months and get barely 2 hours sleep a night. It's had a massive impact on me. I feel isolated and down in the dumps. I'm not able to work at the moment so spend all day everyday on my own. Everything is a struggle as can't bend down without pain so if I drop something, it stays there until my partner is back from work.

I've been trying to keep positive and keep going and not ask for help when I need to to avoid further problems & pretend I feel fine when I feel awful so his family don't think I'm moaning again. But I feel so horrendously guilty that I'm in pain and my health has caused me to have relationship problems. After not sleeping now for 40 hours, I think I've reached breaking point!

I have no idea what I can do to try and help my partner and his parents understand my situation and recognise that I need support from them right now, not moaning about me. I already feel bad enough!

Has anyone got any tips they can share? Do some people simply just not understand?



  • My eldest daughter aged 42 has chronic illness (not back related) and is medically retired. Her husbands family had a family discussion to decide whether they thought she was really ill. And then told him he would be better off leaving her. Fortunately he knew how ill she was and it now means that he has little to do with his family. I do not understand or can even begin to comprehend how their minds work. We are all but seconds away from disability. Not much comfort to you I know. Only to say there are some weird people out there and you are not alone. I don't think there is anything you can do about the parents. It's your partner that you need on side. No doubt you have tried to explain your disabilities and pain. Has he attended Dr appointments etc with you so the Dr can explain what is going on? So glad that your family are supportive. I am sorry I can't help more.
  • dilaurodilauro ConnecticutPosts: 9,877
    This is one of the most difficult situations. It creates more stress and emotional pain, then your actual physical pain. There are so many options to help people deal with the physical aspect, but it not always easy when it comes to the emotional, the living aspect.

    One of the problems is that for most people with spinal problems there isn't any physical real evidence that you have problems. You look normal to most people. Its different when you have a cast, a sling, a walker, wheelchair, etc That gives people physicall evidence that you have a problem. Without that, people may only look at you as being a whiner, a baby, cant handle anything.

    You can never fight and win that battle.

    Good people can read beyond everything they have been shown or seen. Looking into the eyes of someone hat is in chronic pain tells it all. That glare, that intensity is more noticeable then even seeing someone in acute pain.

    Then there is a level of confusion. Your spouse, significant other, family members, etc only see it is that you are down in out. Basically a non-contributor to he family. Everyone else has to pick up and do the things you used to do.

    Then anger or resentment plays as role. The other person, the non-patient see it as just how more than need to do, pick up the slack, etc. They view it as your not being able to work. So the burden of paying the bills, keeping the house intact, doing all the things that need to be is now solely in their laps.

    Now, fear plays a major role. One, they see you in pain, have no idea in what they can do to help, Their minds wonder. Now that she/he can not do anything, that means I also cant do those things. This phase or element can be very destructive. It can split families apart and worse.

    There really isnt any clear cut approach to fixing this. But for starters, honest , upfront and two way communication is a step to working things threw.

    A while ago, I was asked to write about the emotional impacts of the physical condition. One of Spine-Health's writers doctored my article and then they published it.

    Take a look at The Pain beyond Physical
    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
  • Sometimes even when there is a physical evidence of illness or pain some people still choose to ignore it. Again I site my daughters in-laws again! My daughter has been accused of putting on ptosis (where the eye or eyes drop spontaneously). I quite agree with you look into the eyes how ever hard someone tries to hide their pain it is clear to see. Unfortunately the people we are referring to have their own agenda. No illness or diagnosis would alter their opinion.
  • Thanks for your comments. It's such a hard situation and you're right Ron, there is so little discussion about the emotional side of things for a patient and their significant others. My partner has been to most of my medical appointments and until the second failed surgery, he was amazing and supported me through everything, but sadly something has changed. Not that any of my doctors have actually discussed anything with us about the relationship difficulties caused by pain....Although my opinions on including psychology in medical consultations are a completely separate discussion!

    I tried (and failed) to have yet another conversation with his mother last night to explain my situation. It was a hard. When I asked her how she thought I'd felt at being told my spinal problems would become progressively worse and that I may be left struggling to walk without sticks, she said she didn't care how I felt and that she didn't care if I ever walked again unaided. This was just one of many cruel comments. The lack of empathy is unfathomable!

    Anger and resentment is a big issue I've found with chronic pain and I feel in turn for me, this has created more guilt. This is by far the largest thing I feel alongside a lot of self-blame. I really understand what you say Ron and really appreciate your post. Without communication, it's impossible to work through these issues. How you get to the stage of communicating with people who don't want to talk and simply want you out of their life, I'm not sure.

    Since ive had pain, I've learnt a lot about the good people in my life and I have really learnt who is there for me when the chips are down and times are hard. But what do you do about the negative and destructive people who try to pull you down? I mean it's one thing not understanding, but it's another to deliberately try to break up a relationship because someone has health problems. I agree that I need partner on side. Unfortunately, his mum has a hold on him and he won't stand up to her, no matter how rude she is.

    I'm currently at a place where Ive had months of being put down by the family and a lot of emotional battering. I now feel angry that I should have to put up with this when I'm dealing with so much already - and now largely alone. It's become so much of an emotional burden to have this constant criticism from my partner's family and lack of support from him that I've become quite depressed. My priority at the moment is to get well enough to go back to work - something which I'm desperate to do really soon. However, I feel so down that I'm finding it hard to motivate myself to get out walking every day and I know I need to be doing this. I've also lost my appetite and struggle to even manage one meal a day.

    I'm at a bit of a loss as to what to do!
  • gfishggfish Pittsburgh PAPosts: 160
    Letter to Normals from a Person with Chronic Pain & The Spoon Theory
    This was quite popular on the old website, and I see someone requested it, so thought I'd reprint it again.

    This is an adaptation of a piece written by Bek Oberin.

    A Letter to Normals from a Person With Chronic Pain

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

    Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

    Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

    Greg fisher
  • Thanks for all your comments. Unfortunately, all of my efforts to explain my situation have not worked and my partner has decided that he would be better off without me. So, maybe one day I will revisit this post if I meet someone else. For now, I'll focus on the people who do understand and care.
  • How are you coping?
    I'm sure you will have a lot of true friends to help you through this.
    In the future, when you are with a selfless person who knows what love is, you will look back on this terrible time with a feeling of...why did I put up with it for so long.
    I'm glad you have such supportive parents too, and of course, us Spineys :)
    How is your back at the moment?
    Kirsti x
  • I am so so sorry. Sending you all the hope and luck in the world.
  • Lily2014LLily2014 Posts: 84
    edited 01/13/2016 - 2:29 PM
    Thanks both. I can't really comprehend what has happened. My whole life as I knew it has fallen apart in only a matter of weeks. I was told by my partner that he had made the decision to leave me after my op because he wanted an easy life and had had enough of me. This only came to light in the last week. To make things worse, we were meant to be getting married in 6 months. So now here I am in pain everyday, I've had to leave my job, I can't afford to live where I do and because my leg was somehow damaged by the surgery, I can no longer drive to see friends and family. Oh and now I'm alone! I've moved in with my parents for the time being, but they live out in the sticks so I can't stay here, but right now because of the problems I have with my leg/back, I don't know if/how I'll be able to live alone. It's a real mess. I've become more and more depressed in the last few weeks and I feel like I want to give up.

    My back is doing ok on the whole, although I'm still on the oxycontin to manage the pain. I'm desperate to get some physiotherapy to help manage the muscle spasms, but still waiting for all my notes to be transferred over. My leg is still not right and I've not heard back from the hospital about when my appointment will be and I'm not sure if I'll go or not.

    After everything I've been through in the last few months, I keep thinking that you're right, if I find someone special who really loves me, I will look back on this terrible time and wonder what on earth I was doing with people who have been so terrible to me. I've had no support anyway from my partner and it's only made life harder to have him around so at least now I can focus on trying to feel back to my old self again soon. But really, how can people justify this type of behaviour??
  • Nick.nyNNick.ny New York,NYPosts: 121
    I'm really sorry for what you're going through physically and emotionally. It's sad to be surrounded by toxic people who don't have the human compassion to understand.And it's tragic those people WERE your soon to be family, your soon to be husband and parents in law.I guess is human nature and behavior, because animals behave differently they saw loyalty,humans they turn you the back. Be glad it's over.better now,they weren't worth to be family after been so terrible to you and special at the time you need them the most.focus on your self to get well, go to your medical appointments and you'll be ok. Remember "Time heals everything ". You will find the special person to love you,to make you happy and care for you and then yes you'll loock back and be glad for this to be over.
    Wish you the best of luck and just look up front.
    2011 ACDF C 4/5/6/7.
    2011 repaired sternum with fixation plate and 9 screws.
    4/2011,3/2012,11/2012 and 6/2013  Rotator cuff surgeries.  
    1/6/2016 revision ACDF C4/5/6/7, plus fusing the level above that C 3-4.
    Pending L5-S1.
  • Thanks Nick. Really appreciate the advice and support. It's so difficult to find out how some people can have so little understanding and at such a hard time. I often sit here wondering whether I've been too needy, wanted too much support, or tried too hard to make them understand. I suppose it's easier to blame myself than accept that the people I loved have let me down so much. But you are right, time will heal the pain and hoping I come out better off the other side. It's just a very sad situation and I couldn't have foreseen that having the surgery could have prompted this response.

    I may be alone and hurting, but at least I don't have people criticising me or putting me down about 'not coping well enough'. If only people could empathise with us spineys. I think it takes a special person to stand by someone who has spinal problems. It's never ending, emotionally draining and extremely difficult to understand. There must be some nice people out there who stand by their partners?? Do give me hope that not all people are like my ex-partner!
  • Kirstij79KKirstij79 UKPosts: 158
    edited 01/15/2016 - 12:03 AM
    How are you today?
    It's so true that's it's better to be alone than to be with someone and feel lonely. Chronic pain can make you feel alone in a crowded room but it's not fair to feel like that with family. My husband started off a bit rubbish but has become wonderful!! I'd rather it was that way round tho it was tough at the time.
    Some people have no empathy, they find it impossible to put themselves in someone else's shoes..."your pain in my heart"....
    This is no excuse tho to be so cold and cruel.
    You Will start to heal emotionally and I'm sure it will be a weight off your shoulders not to have to be scared of being in pain for fear of being judged in your own home.
    Now you can focus on You, on healing inside & out.
    Keep us posted :)
    Kirsti x
  • Hi Kirsti,
    Today has been really mixed. I had the most terrible back pain so spent most of the day walking/lying in bed and then this evening the terrible sciatic crushing pain came back. Luckily it has now gone thanks to some oxynorm. I spent quite a while today focusing on trying to walk 'normally' without my crutch. There is definitely some improvement so I've been feeling really positive and quite proud of myself! I realised I've been walking on the outside of my right foot and tiptoes on my left to avoid the terrible limp. Not sure if this could be creating other problems, but finally my appointment with the physiotherapist has come through for next week so looking forward to getting some help with it then. Since I've had this obvious limp, I've become really anxious about going out. I really hate people looking at me and asking what's happened (it's surprising how many people strike up conversation about it) and I feel really self-conscious about how I look when I walk. I've had a few people shout cruel stuff in the street which has of course made me more anxious about going out & about.

    It's good your husband has really helped you and is so wonderful now. It's nice to hear that other people do have great support. My now ex-partner was quite up and down so maybe I should have seen it coming. At times, he was really supportive and showed he loved and cared for me, but at other times, he didn't really seem to care. Not too sure why the hot and cold.

    The worst thing about what has happened is how it has made me feel as it's really knocked my confidence which was already battered by the surgery. I've been focusing a lot on trying to find some work to keep me occupied. What I'm finding so so difficult is to try and feel good about myself. I'd spent years coming off all the pain meds and had just got to a place where I was able to manage the pain and accept the impact my back problem was having on my life. After the first surgery, I felt really down, but I worked really hard to become a happy me again. And then as soon as things had started to all fall into place with my health and my life with my partner, I reherniated the disc again. I don't have very much self esteem about how I look and feel like I'm not a very nice person to be around right now. I'm down in the dumps and feel angry about what's happened with partner and surgery. Part of me feels like I'm not surprised he doesn't want to be around me as I don't really want to be around me either!

    And then I also question whether I'm not a very strong person and should be dealing with everything much better. I've read quite a few books, posts on here, articles etc and many people say they've never wondered 'why me?" and have just accepted what's happened to them after they've had a big trauma or experienced chronic pain etc. I really respect this and believe this kind of thinking helps you to get over whatever it is which is causing you pain (emotionally and physically). But I do often sit and wonder 'why did this happen to me?"...and then I feel really really guilty about having these thoughts.

    Sorry for going on and on. I'm trying so hard to stay positive, but I don't really feel very good at all. It's so nice to be able to talk to people on here and definitely makes me feel less lonely. As you say, chronic pain can be so isolating and I don't think as much as they try, any of my friends or family really do understand the complexity of the emotions you experience with chronic pain. It would be nice to chat on PM if you have the time.
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