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Howv to deal with family and loved ones who do not understand/support you while dealing with back pain?

Started by debblue on 09/27/2011 11:05pm

Tihe discussion title says it all.How do I get support from my loved ones while dealing with them to understand that it is not in my head ? I have problems with this too as I used to be able to do everything! Now I am happy if I get out of bed in the morning,and make it to the couch!?

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Hey Debblue,
That is a difficult situation. Maybe because you used to do everything, they are having a hard time seeing the changes in you. So maybe it is denial on their part and they are truly concerned but can't say the right things (as a nurse you know how that goes).

Maybe finding articles about your condition in an easy to understand format that you could print out and when you feel that they just don't get where you are coming from, hand them a copy and say, "This pretty much covers what I am going through right now, please take a look at this in your leisure time". Sometimes, that is the only way people will understand. That way it is not you complaining (as they see it) it's just the facts.

I have also learned who my true friends are while going through this process. I have lost some because I no longer work with them or they just don't get it. I don't think anyone can truly understand it doesn't happen to them. I had a dear friend of 17 years, who I haven't talked to in 2 months because she said I was being needy. I admit I do get teary alot but calling her once a week is not being needy. We always talked once a week before, but because I am not the most upbeat person in the world now, I guess I am needy. There is so much we are going through and I decided having friends like that is just not therapeutic for me. It hurts deeply but I need to watch out for myself.

I am very fortunate in the fact that most of my immediate family is very supportive and understanding. My husband is my cheerleader and sometimes my caregiver. I could never make it through the day without him!!!!

Let me know how things are going!

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I am going through the same thing. My husbands family says im faking it and that i should go out and get a job or even walk to a job. It hurts me very bad, so i stopped talkin to and seeing them, if they cared so much they would come visit or talk to me.

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debblue -

have you been to a Specialist to pinpoint the problem ? / an MRI done ? if not , you really need to go
see a Doctor NOW who deals with this level of pain . NO , the pain you are feeling *is not just in your head .
the longer you wait , more trouble it could mean ? all of us who live with chronic pain wish you well .

good luck to you .

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I have been going through the same thing for 4 1/2 years. Since I had my first 2 level fusion in my neck. Now I have 4 fusions in my neck with one that was a redo from the first 2. I also have 2 fusions in my lower back that they did from the front and back. My wife thought that after 3 months you should be able to go back to work. It just doesn't work that way. She was telling the kids I was lazy and didn't want to work. She also accused me of not paying or even helping to pay any of the bills. she was taking all my disability and telling them that. They believed her anyway I injured my back building the house they are living in right now. I am temporarily living with my mother till the divorce is final. Don't let it wear on you and most importantly DON'T let yourself get stressed over someone elses stupidity. It only causes you to get in more pain. One thing I kept telling my wife and kids was to go to this site and look at the stories. It's not just me that has this problem, everyone with messed up backs has this problem. They would not go on the site and wouldn't read it when I pulled it up and handed them the lap top. They would always say "I don't want to right now" I wanted to just throw my hands up, so I just told them if they weren't going to read it then don't bother me. It still didn't work. I am getting a divorce because my wife thinks I am Faking and doesn't want to be married to me anymore. Whats really bad is the kids are the same way. I found out today that they have to do another surgery on my neck and my lower back. it seems like I am on a 2 yr surgery cycle. They think I am lying about the pain to get another surgery and get more pain meds. they don't realize how sick I am of them. I have just about every name in the book as far as spondeolythesis, failed back syndrome, DDD, Stenosis,scoleosis, severe foraminal narrowing,Arthrosis, and a few others I can't think of . they don't realize a Mri and and Myleogram tells the truth. When the Dr. sees facts is when they operate. Da,mn if its not sickening and stressful as it is, don't make it worse with more stress. I kept telling them I can't heal under the stress. So really I don't know what to tell you. I bet theres a whole lot of divorcees on this site where the other spouse took off on them because they because they didn't want to live with someone who is disabled. So be prepared. Hopefully you won't have to.
I am also to hear about you melissa, My wifes side of the family was the same way, I would hate to know I think, about how many hours they ALL sat around talking bad about me without even bothering to research the problems I have to even know what they are talking about. It does hurt bad when people treat you that way. It's just wrong, I just hope they can still make peace with God for the way they are treating me.That's a whole lot of forgiving to do if you ask me.

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I've been dealing with this off and on since 1983, and you really learn who's really there for you in times like these. My older kids who grew up with it and are pretty supportive. My youngest is 17 and she says i complain for attention and want to be "babied". But I chalk alot of it up to her age. You know how teenagers are. And when I'm really having a bad day of pain she is more attentive.I think she sees more than she wants to admit. It's helped to let her sit in on a few Dr. visits cause she hears what he has to say and it validates things a bit.

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I'm so sorry to hear that JoeyBobbi!! Thank you, i dont need any stress so i just let them talk about it and i dont bother with them because of my condition. Reading your post made me sad for you, because i just thought about my husband, he's the only one that is supporting me through all this, and he even said to me if i decide on the fusion surgery he will be right there to help me. I hope things work out for you JoeyBobbi!!

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Its really hard for people to understand the kind of pain we endure. I was injured at work april 2010 and did not have my surgery (l5-s1 fusion) until March of 2011. Workcomp can really suck but they are now taking good care of me after I went to there doctor for IMEI and he said I was definetely injured on job and need surgery. Ok well, still am struggling after the surgery. Its been 6 months and everyone thinks well you had it fixed so you should be all better.... not true. Back surgery is a 12-24 month recovery. I feel lucky because I believed mine was successful but very hard surgery to come back from. Have you been to a dr, to diganoise exactly what is wrong? I do know how depressing it can be to be in pain all the time, I do feel for you! Good luck to you, every want to talk just post!

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Arlie: I had my 3rd back sugery Oct 2010,( anterior interbody lumbar fusion L4,5)and as of mid Aug. I began having severe back pain again.The C.T.scan showed the fusion was not healing in the lower part of the fusion.My Surgeon has ordered a "bone growth stimulator"which I will be wearing 24/7 for several months.I just started wearing it yesterday. I had an aweful day today.Probably not because of the stimulator,just because of life.The only thing my MD will give me is Vicodan 2/day or Tramatol. Just not cutting the pain.I am very frustrated...my life used to be so fun,no more. Just pray for pain relief!!

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I am not married or in a serious relationship...my Mom has Dementia,and I am responsible for taking care of her 2-3 days a week, that tention doesn help! Where to go,what to do for Help??

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Joeybobby: So sorry to hear of your situation,I will pray for you!! God Bless!

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Hi Debblue
Thanks, so sorry to hear about your situation. I can't imagine having back problems AND taking care of someone else. Your right about the tension and the stress. I wish I could think of some kind of answer for you. Is there not anyone else in the family that could help. You said you are doing it 2-3 days a week. You might have to tell whoever is doing it the rest of the time that you just can't do it. You need to take care of you right now and you just can't do it without a lot of pain. Seems like they would understand. You may be able to find a rest home that will work with her Medicare, Medicaid and Social Security assuming that she is that age. Sorry I am not much help, I will be thinking about you. It sure sounds like you are overdoing your ability and going to hurt yourself.

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Joeybobbie: Thanks for your support,and concern.I know that taking care of my Mom is NOT a good idea,however,it is my brother who is living with her,and he needs a life too. Mom is very stubborn,and doesn't want to go to a nursing home,(like most elderly people).We are involved with Social services,but need to get assets down to below 3,000.00$.She just will not allow my brother to get to that point.We have tried to explain that we are also suffering because of her decisions.(MY bother has developed an ulcer).
This is a delema we have never had to deal with,and can not find answers.We love our mother and feel that she has had to take care of us as children,,so we should be happy to take care of her.In the mean time our quality of life has been has been cut short.Only GOD knows what the answer will be.

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Hi Debblue
You might try taking her to one. Maybe take her to eat or something she can do and just stop by one you have checked on. They could give her a tour and show her the activity's and social interaction that goes on. You could re-assure her you will be there alot to check on her and visit, My Grandmother wouldn't go to one and once she finally did she loved it. She was with a lot of people her age, made lots of friends, and they all had a lot in common. You and your brother are going to have to do what you have to do, It's effecting both of you, It sounds to me like it's reached that point. You have a life too and it will drag on until your in there with her or the hospital for more serious reason's than you have already. It would be hard to make my mother go also so I can't say I could either right away. But eventually it does reach a point. Both you and your brother are suffering mentally and physically. I do know though, like my Grandmother, they do end up really liking it. They get to do so many more things with people thier on age it grows on them. alot of places even take them on short trips. Maybe if she took the tour she would start thinking about it.

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I totally understand your question, but have no answer; just empathy. Have you had a diagnosis?
I'm finding, especially if you're "the mom" you've always been available and nothing should keep you down. In my case, I have multiple issues from being rear-ended, and because no one has put the puzzle together, I'm taking strong meds, which shouldn't be a long-term answer.
I hope you find a solution; my family seems to think it's either in my head or it'll go away.
Keep me posted and I feel for you.

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hi Friends,,,yup,,goin through same problem HERE..I think its a MOM/Woman thing,, family too used to us doin it all, and all of us now have this,had surgery,n cause of havn surgery,, familly thinks all better she should b bak to normal..But problem is even after surgery as time goes by were all feelin more PAIN, n limitations...:) :) :)

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