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I was wondering how everybody else's family and friends are in supporting them.
Do you find sympathy turns to annoyance easily?
Are you expected to do more than your physically able to manage?
I hate feeling like a victim of chronic pain but at the same time need so much understanding that I dont always feel I get :(


  • My family (parents mainly) isn't very supportive, despite all evidence I have multiple problems with my back. When I say I can't do something due to pain I hear "oh please, you're younger than me" (I have a post about this). Thankfully I find support in my finances family, his mother is understanding (she has arthritis and double knee replacement).
  • In my opinion no one really understands chronic pain and i feel that a lot of people think you are either faking it or just don't give a damn. I have struggled for the past 2 years with support from my husbands family and even with my surgery coming up June 17th they still are not supportive. My husband and I even went to therapy because the lack of support was starting to tear us apart as a couple. I have really found out who my true friends are through this process. I have learned that it is ok to be selfish and take time for myself to heal. This is my journey and if people do not want to help me through it then it is there loss not mine.

    Stay strong and keep fighting.

  • See i do have supportive family and my partner does do everything he physicaly can but emotionally i feel alone. I put on a strong face and grit my teeth but inside I feel a mess and everyone seems to say the wrong thing.
    Its been such a long road and theres no end sight. Iv never thought im the kind of person to be depressed but I think im only kidding myself.
    Hope you both get the support you need.
  • dilaurodilauro ConnecticutPosts: 9,865
    edited 06/06/2015 - 5:05 AM
    and chronic pain, is that for the most part, people can not see chronic pain! There isnt a bandage, a sling, etc that others can easily see that the person is in pain. You could almost write CHRONIC PAIN in red across your forehead to people to see.

    Even with crutches, wheelchairs,, the one most effective way to know someone is in pain is by looking into their eyes. The eyes never lie, and anyone who does have chronic pain can easily tell when another is in chronic pain also.

    Our spouses, significant others, parents, etc at times have a hard time understanding all of this. This is especially true for younger patients. It seems that young people should be able to do everything. Well, we know that isnt true. The one thing that is in favor in dealing with spinal problems at a young age is that your body is stronger, should react better to physical therapy and other treatments.

    I started with back problems at 15, I had my first spinal surgery when I was 28. Take a look at my medical history. I fully understand what support is. I have been fortunate to have a wife who has totally supported me all those years and also two
    wonderful children, (adults 37 and 40) that have been there for me always.

    You cant ask for support and help. You want people to understand what you are going through. Just remember it is very difficult for them to do so. The best way is through open and honest two way communications. But I understand sometimes, that is so very hard to do.
    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
  • I try to explain to people how it affects me but I find they dont listen properly, they treat it as if i was complaining of a headache so I give up trying, I just dont say anything anymore.
  • Apologies, I sound like a right whinger! Haha
    Im not....honestly
  • dilaurodilauro ConnecticutPosts: 9,865
    Dealing with chronic pain is very draining both physically and emotionally.

    Having to deal with this with others can make it even more frustrating.

    There is no really any answer on how toke that easier, but don't beat yourself up .

    You are the one in pain not them
    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
  • The best thing I ever did was bring my spouse with me to some appointments and my doctor laid it all on the table, answered any questions that were there and by the time we left, my husband, whom always has been extremely supportive became even more so, but those visits ensured that our children became more aware that my spine issues were not going to get better, that I needed the love and support and understanding from my family .
    Sometimes that is the best option, let them talk to the doctor themselves, ask questions they may have, and have the doctor explain your condition.
    Too often, well intentioned family thinks that they know or understand since "everyone has back pain", but they don't understand that an occasional flare up of back pain isn't even on the same planet as living with and trying to cope with all day, every day pain.

  • TraceyelizabethTraceyelizabeth WalesPosts: 30
    edited 06/07/2015 - 4:29 AM
    Yes thats true, its extremely emotionaly draining and I think thats what people struggle to see.
  • welcome to this forum and please don't worry about saying how it is ... this is the one place that you can tell people how you feel and people will have understanding of chronic pain and what goes with it!

    I am lucky now as my partner is very understanding and supportive, but that has not always been the case. I have awful memories of laying across one side of my old rayburn while attempting to cook supper ,as my ex husband did not understand or care. He would not even help empty the washing machine and dishwasher, two things I really struggled with on a daily basis. My youngest was 2 at the time and I used to cry while attempting to bathe my two children and wash their hair due to extreme pain of bending over the bath. After two years of extreme struggling I heard my ex shouting from the bath. His back had gone and couldn't get out the bath. Hmmm ... very tempted to just leave him but I kindly pulled the plug out and threw him a towel as that was all I could do. I did drive him to the osteopath the next day even though that was something he had never done for me! Sadly some people choose to not understand and not listen but there are many here that can help offer support and make you feel less alone through hard times.
    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015

  • Hi, my partner has been with me for most appointments and he does have a lot of inderstanding about my situation( well as much as possible i think)
    I think its me really, i get so frustrated. Iv become a very hard person, i dont show much emotion but inside i feel turmoil.
  • Thankyou :)
    I dont know how you coped with such ignorance. I would have been ina rage!
    thankfully my partner tries his very best,But it has put tremendous pressure on our relationship, when he all of a sudden become my carer rather than my lover i found it very hard to act like his partner anymore.its other people i struggle with too,friends and my employer are oblivious to my limitaions even though iv been through it with them many times.
  • I've been living with constant 24/7 chronic pain for nealy 10 years now. I've got 2 young children. At the start I was very guilty of pushing through the pain & trying to be just the same as before...my back actually 'completely went' shortly after having my first child so I was doing even more than ever before! I was in denial. I truly believed I'd wake one day & it would be gone.
    So my chronic pain history is very slow. There was no big accident, just very tedious degeneration. I've found that different people have different tollerance when it comes to living with a chronic pain sufferer. Some people are good for the first few years & then just get run down by all the cancelled events & lack of 'fun'. They are the 'friends' that just drift away over the years. Like many others I've learnt the very sad lesson that a true friend is very hard to find.
    Both of my parents suffered terribly with spine problems throughout their lives. My Dad's back is still very bad. Although my situation is very much worse they both understand & are incredibly supportive but they live in England & I live in Texas. I know they feel powerless & worry so I hide a tremendous amount from them. Chronic pain can be so very lonely. That's why I started writing here.
    Some people are naturally good at caring & feeling empathy & compassion for others. Some people just aren't! It's very hard when the carer of the family was you...the chronic pain sufferer. Your partner not only has to deal with all the ways your lives have changed & fear of the future, they also have to adopt a very different role. When we promise "For better & worse. In sickness & health" we never imagine for one moment that we will have to live it until we're old & closer to the end of our lives.

    A large percent of 'normal' marriages never make it. I wonder what that number when one becomes a chronic pain patient?
    That's where I am in my marriage at the moment. I know that it takes communication & work but pain is so exhausting! It's the emotional side of living with pain that my husband seems to find it the hardest to deal with. I think a lot of people do. Chronic pain is so bloody hard for all involved. My only advise is keep talking, keep trying to explain & save some 'spoons' (Spoon Theory) for your partner. They still need to feel loved & appreciated. Chronic pain has a way of taking all we have. We focus on it (understandably) way too much at times. It's important to remember that others need our understanding & compassion too!!
    Osteoarthritis & DDD.
  • edited 06/07/2015 - 1:50 PM
    I have a three year old daughter whose mother passed away ten months ago. I work full time and have her in daycare. I do not have in home assistance and I'm dealing with sciatic type pain for the last ten months. the mother side grandmother took me to court for visitation instead of asking for it, so after those court costs their win of time is much less than I take her to visit them.

    I expected this pain to go away. its not. the doctors have completed mri and x-ray, both appearing normal. I take ibuprophen and tramadol to combat the pain, which the initial description to 'normals' describes my feelings to a t. I struggle for the most basic things, but still manage to perform my fatherly duties and have the most brilliant child. but..im scared. its been ten months. is this it now? will it never get better?

    I'm scared of that. I've been telling myself this is temporary...and maybe a cat scan will show something to the docs...but...what if it doesn't? I do not want to live the rest of my life with this pain. I lay down in gas stations to get my coffee if the line is too long. I want to play with my child. I want to run and dance again: I'm 37!!!!!! this has been my first online day of really researching this pain and chronic pain, I've just been to busy and exhausted the past ten months to find the time til today, and from what I've read, I am so very scared now.... please tell me this will not be me.
  • Im so sorry for your loss and i wish i had answers for you but everyones pain and reasons for the pain are so different.
    I have just turned 38 and can totally sympathise with your situation of trying to take care of children, working and just living day to day.
    Its so very difficult to put a brave face on and carry on but carry on we must.
    I live off pain killers and for the most part feel quite hazy even though they do little for the pain.
    Maybe a ct scan would show more?
    Im sorry i cant help more, all we can do is support each other.
    I hope you find the reason and get some relief:)
  • TraceyelizabethTraceyelizabeth WalesPosts: 30
    edited 06/07/2015 - 9:45 PM
    This is very true, we do still need to consider our families and how it affects them. Sadly, like you said, theres not much left for other people, pain isall consuming and completely draining.
    After reading this though im gonna try extra hard :)
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 06/08/2015 - 7:31 AM
    Scared About This. I'm so sorry. I can't imagine how had your life is at the moment. There are a number of conditions that cause 'sciatica' type pain. My husband has suffered from piriformis muscle issues & he would describe his pain in exactly the same was as I would describe my sciatica pain from nerve impingement in my spine. Advocate for yourself. I know, I REALLY know how completely exhausting life can be. I didn't educate myself or get involved in my condition properly for the first few years...I just went to the clinic & did what I was told. I hope further diagnostics will bring the answers you need.
    The sooner you can identify the true cause of your pain the sooner you can get the correct treatment. I've got 2 young children. There are many parents on this forum & we've discussed the issues around being a chronic pain sufferer, both physical & emotional. I hope you can find some time to search & read the forums. There's some great advise!
    Just a little note.... My daughter just turned 5. Things do get a little easier as they get older & need a lot less everyday physical assistance. Treasure the moments. Time goes by so fast. ;-)
    Osteoarthritis & DDD.
  • Tracie. I met my husband when I was 21 (he was 22) & I honestly believed that our relationship was so strong that nothing could touch us. Chronic pain has a way of effecting every aspect of our lives if we let it. We are trying to work through this but after 10 years this is the worst, most devastating thing that chronic pain has thrown at us. We weren't coping half as well as I thought we were. Now there's so much damage control to do & I simply don't have enough spoons!!
    I wish someone had warned me 10 years ago the emotional carnage that chronic pain leaves in its wake. Hug your husband & let him know how invaluable he is to you. Go through this together. There should only ever be 2 in a marriage, chronic pain makes 3!!! Ensure that your relationship with your husband gets as much attention as your relationship with your pain does!! It's all so hard.
    Osteoarthritis & DDD.
  • TraceyelizabethTraceyelizabeth WalesPosts: 30
    edited 06/08/2015 - 9:01 AM
    Such good advice...thankyou :)
  • I am now 42 years old and have been suffering from pain for 22 years now. I have degenerative disc disease and my first surgery was in 2006. I had 2 ruptured discs C4-5 and 5-6. This happened while washing my hair. Something that is so routine that most people don't even think twice about it. Since then I've had a total of 5 neck surgeries. Until this last one in Nov 2014 they've always used everything except my own bone. So 4 of the surgeries failed completely. My body rejected everything they threw at it. The 4th one they used a cage type thing with synthetic stuff plus bone marrow and put a plate and 4 screws. I never had any pain relief from the surgery and it only continued to get worse. So much so I had to drop out of college because the medication I was having to take to be physically functional made my brain just the opposite. In Oct 2014 I had had enough of dealing with the excruciating pain, loss of life and the ability to even play with grand children so I tried taking my life. Almost succeeded. Was on life support for 3 days and of course the psych ward for 9 days. They all finally took me seriously that SOMETHING was really wrong and sent me to a new surgeon in my town. He took a simple X-ray and immediately saw that the previous surgery was a failure and I had no bone grafting in C4-5 and 5-6. C3-4 had barely taken. The plate and 4 screws was a mess as well. 2 of the 4 screws were broken so all that was holding my neck up was the other 2 screws. He immediately scheduled me for surgery and this time took bone from my hip and put rods and 8 screws in as well. That was the single most painful thing I've ever had to endure. So now that I have rods from C3-T1 that area is completely immobilized. So when I turn my head the movement doesn't come from that area anymore and is putting a serious strain on the T-2 to T-3 area which is not meant for that kind of movement. Degeneration and serious other problems are already happening. This is never going to end. I think that is the hardest thing for me to handle. Not having a positive end goal. I used to be so active. Always going and doing and now it's such a struggle to brush my hair, or even try to get dressed each day. I have no one to talk to about it because I'm positive they get sick of hearing it. My children are sick of me not being able to do like I used to. Especially when it comes to the grandkids. I'm missing out on so much. As my name says I am merely existing anymore.
  • I feel so sad reading your post :( i truly feel for you, i really do hope that your children dont feel the way you think they do, i know that when im feeling very low i feel as if no one understands or cares to understand but i know in my heart they really do its just my pain demons getting the better of me.
    Im new to this site but i feel very gratefull to have found somwhere i can release my feelings honestly amongst people who understand, i truly hope this helps you too.
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