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why family does believe my pain
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An_223045 posted:
im new on here and i have had 2 surgery. one in my neck for dengernative disc and the 2nd in my whole lower spine for severe spinal steneois and sciatic. my husband does not believe how much im in on a daily basis. why is it so hard for other to understand you cant do as much as you use to. ive had been severly depressed by all this. its been most difficult to accept i can no longer work. im only 32 my life has changed so dramatically. i need advise.
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jeffsut responded:
I am 26 and have disc degeneration in almost all the discs in my cervical spine.I too am having a hard time dealing with accept that i cant do as much.I am a very giving person and really enjoy helping others,so its really hard to accept this.I think your husband should be more understanding but we tooo must remember that are pain can be hard on those around us too.I hope the best for you and will keep you in my prayers
 
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greg8846 responded:
Hi Anon 14152;
You know your expressing a concern that all chronic pain folks go through. Are family's are the one that sometimes doubts are pain the most. The main reason this happens is your husband is not willing to accept the fact that you have a medical problem. He thinks you should not talk about it and not talk about how bad you feel. Although he needs to understand on frustration and to be able to do the things you used to do. No one wants to hear there loved one suffer with pain or for that matter watch you sit in pain and they are helpless and unable to do anything for us. Believe me in time he will learn to accept the fact that your hurting and you need his moral support and love this may take time, but he will come around. He also scared to . Well i hope this has helped you some. And i wish you well.

Greg Armstrong
 
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suthngalb responded:
Hey I understand and feel for you! Not only does my husband not understand but my entire family does not understand, I am in my bedroom crying right now I hurt so bad and my husband is in the living room doing his thing. He would never come in here and check on me see if I need anything. My daughter has a 9 month old and she thinks I should do more to help her because she is so tired! Hello what does she think i am! any way your not alone but I certainly do not have any advise for you I need it myself!
 
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cffeebeanbebe replied to suthngalb's response:
I to understand and it sounds like my life to. This is usually how it goes my husband comes home from work, he doesn't want hear about my day about the pain. But he expects to have a drink waiting for him.He is very much into sports baseball and hockey.So instead of wanting to be with me, maybe watching T.V. Or having a conversation, he ignores me, and I end up in the bedroom crying because of the constant pain. He also doesn't check up on me. He ends up falling asleep on the couch,hardly ever says goodnight.
Also my family my children don't understand they are 32 old twin sons and a daughter 34 who is a drug addict. I keep telling her you are making me sick my fibromyalgia to flare up she knows.addicts are selfish. You are not alone
Love & Peace Olivia
 
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greg8846 replied to cffeebeanbebe's response:
Hi Olivia
Well first let me say i sorry i am for the pain that you have, i understand and know how family's caan be very cruel
to the ones that say they love you the most. Well let me tell
you something, when your having a bad day, nothing is going right your husband either is living in denial or is very selfish. Its hard to be on your own, i know you feel very isolated with
your pain issues and the depression and other terrible things that got with the disease. Forty years ago they didn't know
about HIV, AIDS, Fibro and other diseases that were killing people. They are now just putting a label on these very painful diseases. I have had Crohns Disease for thirty-five years and at first my family doctor delivered a death sentence he walks in the examination room and says i think you have Colon Cancer. I was anemic i was having 20-25 bloody bowel movements a day and had lost 40lbs in three weeks. I ended up in the hospital again. This time he transferred me to a huge hopital in Indiana and the GI doctor did a colonoscopy and found at first Ulcerative Colitis with in three to four years i had full blown Crohns Disease. At the time he told me i had cancer i was only 17 years old, at that time i was in High School i was already a licensed Emt-A in 1973 then in 1978 i became a licensed Paramedic Fire Fighter, went to college got my Bach in Science and from then on i have been in the Medical field for a very long time. I was a Deputy Sheriff also for eight years couldn't stay away from that Public Service route. Back then it didn't pay as well until the late 90s then the pay increased a lot.If you ever want to talk in private you can email me at gregory8846@centurylink.net . Some things you would not want to put on a public board although you can learn a lot here. Good luck and good health look forward to hearing from you.


Greg Armstrong
 
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Trudy292 responded:
I am 41 now and have not been able to work since 2004. Pain is very debilitating and it makes us even worse if our family denies the fact that we just aren't the same anymore. I am kind of lucky in the sense that my family does understand most of the time, unless I am having a really bad day. I do have 2 teenage boys that will do just about anything to help out their Mom. I love them to death! It is really, really hard for US to accept the fact that we just cannot do everything we used to do or want to do now. We have to accept our limitations and basically force the people around us to do so also. If you can't do it, don't try. Why create more pain for yourself? If I can't do something, I will make sure that I don't do it because it just makes me worse off. My DH has made my boys help pick up the slack and we make it through. My DH has been unemployed now for 8 months and actually that has really helped. The boys see their Dad help out more, so they do also.

When things get really bad, you can always come here to sound out as you have this time. We can be here for you even if your family cannot. Your family is in denial, eventually they will come around - they really have no choice but to do so. In the meantime, don't overdo it and they will get by. They have 2 hands and are much more able bodied than you are - just tell them that! AND keep repeating it!

Trudy in Ohio
 
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greg8846 replied to Trudy292's response:
Hi Trudy;
Im very sorry that your famil will not except the pain and the suffering that you going thorugh. I know and understand the thiings that your going through and feeling too. the biggest thing i think is a lot of folks are in denial by the ones that love us the most. The feel helpless because there is nothing that they can really do as you mentioned on our bad days. I to live in the Ohio Region where the weather change is constant though out the year. It can be a beautiful day but we still suffer the pain and agony that goes with it. Its great that your hubby and your teenage boys can understand the burden that you carry every day. You know you made a statement about why not try if you going to hurt worse. I understand that comment all to well. But i still keep on keeping on even if i have a really horrible day. Im so stubborn, i refuse to accept help when i know i need it. In fact 2 weeks after my amputation i was determined no matter what it took to transfer my self to the bed and out to the wheel chair. I was very active until i got the nasty infection in my body. Everyone in the extended care rehab unit thought i was nut's no i refused to be a one legged cry baby or have people feel sorry for me. But you right Trudy we can always have each other to vent with, because no one but chronic pain folks know what it is like. The reverse of that during the snow when we had 26 inches and ice i refused to bow down and stop. I had a snow shovel and i was pushing it with my Jazzy, i would get stuck, i would roll over in a snow bank and dig myself back out. And people did stare i don't care let them. I know i will go into a store and people will watch me like i have a disease that there going to get. I smile and i ask go ahead i will answer your questions and that breaks the ice.I call my self stubby that doesn't bother me. but there are a lot of folks out there that truely don't understand us . But thats okay, we have pain but its not a death sentence even though some days it feels like it. Well good to talk with you. You take real good care.

Greg Armstrong
 
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transcriber52 responded:
Anon_14152, sorry I missed this post before. You are in a list of friends here. Almost most of us are here because we are the one with the chronic pain, some are family members helping other family members, either way we share so many of the same issues no matter what our diagnosis. I still have herneated discs in my neck, no surgery for me there, but I've had nerves burned, tests, injections, two major back surgeries leaving me with arachnoiditis. So honey, we sure do understand what you are saying. I am so glad so many people have responded to this site. Even jeffsut, thank you. I like that we have both male and female input here it gives great feed back. I notice many husbands have that male thing, they need to fix our problem and when they can't they are really lost. My husband is like yours, suthngalbs and cffeebeanbebes,( and he was a nurse just like I am so I thought he of all people would have had an insight on compasion but it doesn't go that way it seems). He avoids. The TV, the computer whatever it takes because he can't fix any of my pain issues. I try to tell him it helps just to be able to talk, to have a place to vent but he thinks all I have to say now is I hurt. No way! Believe it or not, my life goes on. I moved my daughter in with us this past Jan (2 wks after my last surgery) she had a stoke at one yr of age and is disabled, I drive her to a job program and back to home 5 days a week, deal with both our SSDs and her SSI, I still buy most all the groceries with her help and cook most of the meals. I can not bend down hardly at all. Some days I lift my leg from the accelerator to the brake in my car because my R leg doen't work. Just last week he has finally taken her to work a couple of times a week but I do the rest and almost always have to go get her. It gets hard, yea, I want him to talk with me, spend time with me (he doesn't work right now so it's not impinging his job). I had a pain pump implanted in Jan 2010. The first time I went for a pump refill I was kinda nervous so I asked him to go with me. He did drive me there but he wanted to sit out in the truck drinking his coffee instead of coming into the room with me. I got angry. I don't think it is right I have enough on my plate without having no compasion at home. My mom is no better, she says she "can't trust (me) because of the meds" but with the pump I don't have the med sideffects. I just can't drive her to her Dr or do her grocery shopping anymore is what is real. She became totally dependent on me when my Dad got Ca in 2000 and we bought a house 2 streets away from them. After he died she hadn't shopped in a grocery store in 10 yrs, he did it all, and she is not disabled (physically!!!) She doesn't even call me anymore because I can't keep doing for her. I have found this site to be a great help. Now my husband wants to know why am I on the computer all the time instead of spending time trying to talk with him.. I hope you keep coming back with your input. I know we all have our own stories, this is just part of mine. I just do not want you to think you are alone how you feel. You do not have to go cry alone, give us a post and there's sure to be someone here for you. I just appologize it took me so long to see your post and write back.. I hope you have a better day Trans.
 
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greg8846 replied to transcriber52's response:
Hey Transcriber;

I need to say something your truely a inspiration with all the phsical problems and your childs disabilities is a real tuff. job. And you know something your a very sweet girl or lady your on this Pain Exchange Board almost every day 'of the week. You try to help people to take you mind off your own pain like me huh. You know if we could just escape for a couple of hours each day we would all feel a little more free.You know we are all alike in one way or another, none of us give up on each other like family members do. You don't ridicule on this board because we all know how to get a long and just give each other support and you know i think eveyone here has questions that they don't want to ask for various reasons. It may be because of privacy issue. I know i as asked the other day why i give my emai out. Well there are a lot of older folks here that don't want private things talked about in cyber land, we all know how that works. So if you see my email out there don't be afraid of sending me that private email to me , i would be the lasr one that would ever cut someone down or just be plain mean to them, Well all of you please have a good weekend and i mean this transcriber please take it easy and write me when your hurting or things just went to hell in a hand basket. I would love to help all of you. Oh and here is my email again if not everyone has seen it. gregory8846@centurylink.net . Talk with you all later.


Greg
 
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Trudy292 replied to transcriber52's response:
Wow, I really know about the parent thing! My DH and a girl friend and my doctors office only really know what I take. I mentioned it to my Mother once or twice and got the response - now you are addicted to those things. No, I am not addicted, dependent maybe, not addicted. So I do not take pills in front of anyone. I try to hide my pain patch under my clothes and if someone sees it, they rarely ask about it. One of my boys saw it and asked and I just said it is my medication and he dropped it. They know I take it (immediate family only), but they at least do not treat me any differently for it. The rest of my family -- I don't even bother. They do not understand that I am in pain and they live far enough away that they do not see me on a regular basis. Just at holidays mostly. I don't even mention the pain to them EVER. If the rest of my family is there (kids and DH), they make sure that I do not do anything to aggravate the pain any worse.

Transcriber - I can also understand the daughter thing! We just moved my daughter in yesterday at the age of 21. Thankfully she doesn't have any kids of her own, just a dog. But that was a LOT of work and extra pain. She doesn't clean well or organize much - so most of that was left to me. It was a very rough couple of days, but she is moved now. Now I get to look forward to asking where she is going and her telling me it is none of my business, LOL! I know that it is coming - I just don't look forward to it.

Well - I hope that everyone on this thread has a pain free day! It looks to be pretty good weather here today, so maybe I will be able to get the dogs out for a walk!

Trudy in Ohio
 
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Geradine4733 responded:
As you can see, we all understand and sympathize with your problem. Family and friends want to fix us. When they can not fix us, they feel frustrated, and they want it to all go away.

Take your husband to an appt with your spine doctor. He can show your husband your test results, XRays, MRis, etc. and explain it better. Best wishes.
 
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transcriber52 replied to greg8846's response:
Thank you my friend. I see you here every day also and I think it is great that we have peope that understand our issues. We can't always talk to family or even our Drs don't really understand. Sometimes it's just a few words that can help us get thru another day. Yes, like you, this site helps me to redirect my thinking for awhile that I'm not concentrating on my own pain issues. It would be so nice to have a pain group here where I live but this is like that for me. Gives me input and outlet. I do hope what I write can help anyone because I worry I may say the wrong thing sometimes. It is difficult because being a nurse, I can't always apply that knowledge to my own issues too well. My husband responds a lot, "think like a nurse". Well, I'm too close to my own pain to think like a nurse and be ok. I can't fix myself. I was (am) a neuro nurse that is now the patient and it drives me crazy sometimes. I want so bad to be ok and go back to work but so far it's not what I can do. I thank you for all your support and I read a lot of your info to everyone. You are very knowlegeable and have a lot of issues of your own to deal with every day. I hope you have a good day today my friend. Talk with you soon Trans.
 
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transcriber52 replied to Trudy292's response:
Hi Trudy. Good luck with your daughter. No matter the age we still have to be moms huh.
No girl, you're not addicted to your pain meds and I understand how hurtful it is when anyone responds with that. Drug addicts go hunting drugs. Ruin their lives trying to get their drug of choice. That is not what we are doing, we go to our Drs trying to deal with real pain issues. We keep trying to have a life while we are hurting everyday. I get so angry when people respond that way. I think I need to just walk away and leave them stupid because we are talking about something they will never understand until they are actually in our shoes. People can't even imagine what it's really like. Just like I lost a son at 2 1/2 months old to SIDS, other people that haven't lost a child don't really know what to say. I try very hard to stay in contact with other people that have lost a child because that's the only place I feel ok to talk about it. So many people said some very hurtful things to me when my son died. I have had to realize, we have never really been taught that. I've read the book, I Learned Everything I Need To Know In Kindergarden, well no, I didn't. It has been in my head for years to write my own book about what I didn't learn and the stupid things people said that gave me hell for many years. I couldn't deal to well with that junk. Pain is pain and people that don't go thru it themselves just can't understand our language.
I think you are so right. Not letting people (even family) see us take meds gets it out of their site and they don't have to respond. It is not easy trying to make it thru everyday in pain like this. No matter what our diagnosis is, we all here are trying to help ourselves the best we can. Thank you so much for your response. I know I'm not really alone like I feel sometimes. Other people express the same kind of issues and that lets me know I'm doing ok today. Keep coming back my friend, I like hearing from you. I hope all goes well for you today with your pain and your daughter. Trans.
 
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transcriber52 responded:
Hi Anon, how are you doing now? Please come back and let us hear from you. Many of us here really do care and share your same issues. If you want something more private I can give you my email address, just let me know. I hope you have a good week end. Trans.


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