Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hello!
I am new to this Community and I am a chronic pain sufferer 24/7 that resulted from a 2nd back surgery 6 yrs ago. I am perm. disabled and am on Social Security at 45 yrs of age.
My mother and I used to be very close. I use to refer to her as one of my "best friends".
Approx. 2 yrs ago, my mother told me that I "wasn't allowed" to talk to her anymore about my back or my pain. I was absolutely devastated! I am married with 2 young children and "vented" many times to my husband regarding my pain and my frustration with it all. However, I only called my mother prob. once per week to vent, it's not like I called her every day! But yes, there were times, when I wanted to talk to my mother, a very natural thing no matter what age you are.
My psychologist told me my mother had "checked out" and that it was not abnormal for family members to do this to a chronic pain sufferer. He told me that family & friends do not understand just how bad it is for the person who is suffering.
My mother and I now do not have a relationship at all. It has been very hard at times, but I am getting alot better with not having her in my life.
Has anyone else here experienced a similar situation, with family or friends just not understanding what you are going through, so they just withdraw from your life?
Thank you. ~Carrie
I am new to this Community and I am a chronic pain sufferer 24/7 that resulted from a 2nd back surgery 6 yrs ago. I am perm. disabled and am on Social Security at 45 yrs of age.
My mother and I used to be very close. I use to refer to her as one of my "best friends".
Approx. 2 yrs ago, my mother told me that I "wasn't allowed" to talk to her anymore about my back or my pain. I was absolutely devastated! I am married with 2 young children and "vented" many times to my husband regarding my pain and my frustration with it all. However, I only called my mother prob. once per week to vent, it's not like I called her every day! But yes, there were times, when I wanted to talk to my mother, a very natural thing no matter what age you are.
My psychologist told me my mother had "checked out" and that it was not abnormal for family members to do this to a chronic pain sufferer. He told me that family & friends do not understand just how bad it is for the person who is suffering.
My mother and I now do not have a relationship at all. It has been very hard at times, but I am getting alot better with not having her in my life.
Has anyone else here experienced a similar situation, with family or friends just not understanding what you are going through, so they just withdraw from your life?
Thank you. ~Carrie
Wow! What a negative post, from someone who thinks she knows everything!
First of all, I am not "shoving" my issues onto my family and I resent that you would even imply such a thing. I am also not trying to "change" people and I do not have fantasies!
I am a 45 yr woman with a sound mind and a body in pain, and have also been a strong individual all my life, but there is only so much one can take. I DO OWN MY PAIN & it is not my identity like you have implied. I also have my own"internal reserve" as you put it, however, you don't even know 1/2 of what I have been through for the past 20 yrs.
Also, what do you know about my family anyway? My mother used to be my "best friend" and decided not to show support when I needed it the most. She wasn't "burned" out like you assume. She is a healthy and wealthy woman who didn't run out of "internal reserve", she just didn't want to "deal with it"! And yes, she has CHANGED over the years! I wish I had 1/2 her energy!
As far as my husband is concerned, how dare you ASSUME he was NEVER AFFECTIONATE before our marriage. Of course he was or I never would have married him! Your remarks were offensive and way off base.
Maybe people haven't changed in YOUR LIFE, but the people in mine certainly have and I don't appreciate your negative, cold outlook regarding my situation or anyone elses.
Everyone is entitled to their opinion, but how dare you attack me when you don't even know me! If you don't want to leave positive, supportive threads on this forum, then go somehere else, because I certainly didn't join Daily Strength to encounter non-supportive people like yourself.
By the way, no reply is necesary or is wanted.
~Carrie
Something that took my entire 40's away should be unmentionable? Treated as if a figment of my imagination? Sheesh. With my mother, i've learned simply to not discuss it with her. For some time if I mentioned it, she would say "Well I've got to go do (thus and so)" and exit the conversation quickly. Overall she's been pretty supportive, but she sure doesn't want to talk about it.
Maybe if enough of us add testimony to this thread, some of us can print it and show it to those people - who don't really realize the harm caused by the disconnect or the good they could do for us by embracing these issues.
I am so sorry that you are having a difficult time with your wife's lack of understanding. My husband and I were just chatting about why loved ones cannot bring themselves to be more supportive, it's really a shame. My husband might not show me the little signs of "affection" I want but luckily he is very supportive of my condition and never compains!
You shared a very good idea about printing the messages here and sharing them with loved ones. If anyone here gives that a try, please come back and share what the outcome was. I hope it helps!!!
Anytime you need to vent or just talk, feel free to send me a message personally if you wish. I hope you are feeling the best you can, considering your pain, and I wish nothing but the best for you going forward!
Hugs & Blessings! ~Carrie
You are right!!! NO ONE in this site or anywhere else, not your Doctor, nor your Nurses have a right to tell you what you have gone through or what you are doing right or doing wrong, you know why???
Because NO ONE here as walk a mile in your shoes!!!
I will give you and anybody else support, but I will never criticize them! I will give advice to a battered woman or a battered man, but that is it, I do not have the right to tell you or anyone else here what You have done, right, wrong or indifferent! It is not my position!
You know what you have been through, and even though we are all in chronic pain, it does not mean, that we are entitled to criticize or chastised our fellow members of this group!!!!
Continue your fight, good luck to you and stay strong!
Healing Hugs,
Millie
BTW in case I scared someone with Endometriosis, it wasn't the Endo that almost did me in, I'd become septic from a misdiagnosis (6 yrs of missing it) of Gallbladder, and that's what almost put me in the grave. So those with Endo, don't panic!) Thanks for listening Blessedx2 and again, you are a classy and intelligent lady!!! Bless you. Hunter
Welcome to the group! Here on this site, you will find some very helpful, knowledgable and articulate people. I know our pain levels are all very different. Some people actually work and get to go outside, and others of us can barely move.
As far as the understanding issue goes, I have family members on both ends of the continuum. My mom is normally my champion, yet my sister was born without an empathy gene. She just doesn't have one, poor thing.
Mom is non-judgmental and supportive. However, she cannot stand to see me groan/cry in pain and leaves the area and even doesn't want her little dog in here with me when I'm groaning, (which was the part that kind of hurt my feelings). But my mom gets scared at that point.
Some people here have the gift of giving support, and you will soon learn who they are. It's like a talent, and I'm always thankful to read their responses. I hope you find comfort with us.
If God has any sense of justice for these bastards here on earth, he will make him poor for the rest of his life, or have his future wife leave him when he gets sick and leave him completely heartbroken.
I don't understand why some people are so mean, but I guess that's why we have to stick together on this site.
Thank you so much for taking the time to post your message and share your story! I can definitely see why you are exhausted! I am so sorry that your husband has treated you this way. How cruel can someone be, especially someone that vowed to take care of you? It breaks my heart that your husband is doing this to you and mentally, I know that the pain will be there for a long time. Just know that with time, all will heal, and you will be free to find someone who accepts the "whole" you, pain & all.
There really are alot of wonderful men out there who are caring & compassionate when it comes to chronic pain/illness. I should know because I am married to one. Before Brent and I even went on our first date, during our first phone conversation, he offered to take me to my doctors appt that was scheduled for that same week! I was having severe pain in my arm at the time that was diagnosed as tendonitis, later turned into carpal tunnel (both hands) and then turned into RSD (both arms & hands). All of this had happened BEFORE my back surgeries and everything else that has led me to my pain induced life. My husband has never complained, even once, about my illness or my dependency on him to take me to the doctor or to help care for me when I am totally incapacitated.
So you see, there really is hope. I met my husband when I "least expected it" and believe that you will meet your "Mr. Right" too, when you least expect it.
We are all here for you ExhaustedLady! Feel free to call upon me anytime if you need a "friend".
Hugs & Blessings! Carrie
I was trying to interject some reality into a difficult situation. YOU said your husband wasn't affectionate, not me. He changed? YOU said your mother pulled away. She changed? I don't get it.
Sorry you are in pain. MY pain forces me to deal with reality. Simply being realistic, by saying "I understand why people burn out, or shut down. They don't want to hear about OUR pain all the time, because they all have their own issues to deal with." Was a REALITY CHECK. I am sorry if you want everyone to change, or not to, or I have no idea what.
I didn't attack YOU. I said my piece, because, sorry, I could see your mother's POV. I have never, however been my mother's "best friend" she has NEVER been mine (she raised me, that would NOT have worked) I have three daughters and a son and I am NOT any of THEIR "best friends" (they have friends their own age as do I.) I would not have been able to raise them if we were "friends." Parents are there to raise children, not be friends with them.
You said "She is a healthy and wealthy woman who didn't run out of "internal reserve", she just didn't want to "deal with it"!" END QUOTE
It's the same thing. When I say "Internal Reserves" I mean what people have emotionally and empathically to deal with their and other people's issues. If she "checked out" she ran out of reserves. It happens. Try to see it from her Point of View. I am sure she has things SHE needs to deal with in her own life as well
No, I don't know "all" of what you have been through. None of us do. I, too, have been in Chronic Pain for over 20 years, and intermittent pain for the first half of my life. I don't expect ANYONE to know what I have been through. WE HAVE ALL BEEN THROUGH HELL HERE. No one has a corner on that place.
In the long run one has two choices. take people as they are, and accept that they sometimes have to deal with their own issues, (which means they are not always "there" for us exactly when and how they need us) and they sometimes NEED to check out for their own mental well being, or keep being disappointed in the people around you.
We are all only human. That is what I was saying, and that is NOT a "negative" message.
I am just saying that the "Normals" have feelings, and lives, and pains, and have LIMITS, as well as we do. We don't have a corner on that, either.
Part of being supportive is not just always AGREEING with someone, sometimes it's pointing out WHY things don't go exactly the way they expected. One of the things friends do for each other is to point out when one is being unrealistic, and calling a Reality Check. I wouldn't want a friend who DIDN'T do that. I'd get TOO self absorbed if my husband and my friends didn't do that for me. Maybe you are different.
In the end, we really have ourselves and the Lord to turn to. HOW IN GOD'S NAME is THAT a Negative statement?
Sorry if you were offended. Pain has taken a LOT of my ability to filter away. I was trying to be realistic.
Sorry for that.
I am so sorry that you going through this, but you did say your actually feeling better now that your not talking to you mom. Maybe she was actually bringing you down in some way that you didn't realize.
I was left by everyone, and dumpped in a awful apartment, after my spinal fusion. At the time we were not even aware what he had done to me, lomg story, but I had to crawl on the floor to get anywhere. I had no car, no way to get anywhere. After 18 mo, I had to have the hardware removed, and then was again stuck in my house, tiny single for another very kong time. I had no one at all to talk to, I also had PTSD very severe, I felt so insane.
Peach I have to get one of those T-shirts.
Anyway we are all survivors, and we willl all make it no matter what. That is one thing I can say about all this, I have come a long way, and I still have a long way to go, but now I have all of you.
Hang in there, it will get better!!
Love,
Debbie
Dear Debala,
Thank you for the warm welcome! I am SO GLAD that your daughter finally "came around". It sounds like she finally opened her eyes and her heart to your pain/illness. I bet it made you feel so good that she asked you how you were feeling! My mother never asked me how I was feeling, nor my brother, (who is a Nurse by the way). My husband and I still don't understand it.
Dear Nursedeborah,
I am soooooo sorry that you had to go through surgery and post-op all alone! After my 1st back surgery, my husband was working full time, so I remember feeling all alone as the days felt so long. I didn't have anyone to talk to nor anyone come visit me. I know I at least had my husband in the evenings, but I just wanted to let you know that I can relate to "feeling alone". I know that it is not exactly the same as your experience, however, we had just moved to a small town about 60 mi. east of Columbus (OH) and didn't know anyone so that just made my lonliness and depression so much worse! This was before we had our 2 children. I remember crying for hours at a time, wondering why GOD was "allowing" this to happen.
It is interesting that you had your "hardware" taken out, as this was something that I pursued after my 1st surgery. I had so much "burning" in my lower back, I was convinced that the hardware was causing it, because after all, it felt like a "foreign invasion". My surgeon advised me against the surgery, however, I am wondering why your hardware had to come out and were things better for you when that happened?
As for my mother, yes you are right, I do feel better now that she (and her nasty husband) are out of my life. I don't need that kind of "negative energy". I have enough stress to deal with, without having to deal with uncompassionate people like that!
Please take care of yourself! Anytime, you feel you need a "friend", don't hesitate to call upon me.
Hugs & Many Blessings! ~Carrie
Hope everyone is having as good a day as possible! I was thinking of something today that I wanted to share with all of you. Alot of us on this thread have experienced "family abandonment". While all of us here live our lives in pain every day of our lives, I am sure there are many people who also have to be "caregivers" as well.
My father and I were very close. I was always "daddy's girl" and that relationship continued well into my adult years. My father was diagnosed with adult onset diabetes when he was 40 yrs old. When he was 63 yrs old, he died from diabetes complications. I remember when he was very ill and in the hospital one time, he asked me this question:
"Will you allow me to die"? I loved my dad dearly and he had suffered so much, so I put on my "brave" face and told him "Dad, you have suffered enough. I do not want you to go, however, if you feel that it is time for you to go be with Jesus, then I will support you".
That is the hardest thing I ever had to say. Approx 1 month later ,he was gone. He had "held on" for as long as he could.
The purpose of me posting this is because a few months before his death, he would call me often and "vent" about his illness and his pain and whatever other problems he was facing at the time. He would also listen to me, as it was shortly after my 2nd spinal surgery. We were usually both in tears by the time we got off the phone, because both of us felt so bad that the other was "hurting". I NEVER told my father that I was "tired of hearing about his problems". When I look back on this, I am so glad that I LISTENED to my father during his time of need. I would never have been able to forgive myself "IF I had abandoned him" before his death. We never know how long we will have in "this life", and it is a darn shame that our loved ones cannot bring themselves to be compassionate or care about what we are going through before it is too late.
Hugs to All! ~Carrie
Is interesting that you posted this about the "Caregivers". I lost my dear husband at the age 0f 29 (we married young) he was 20 and I was 17. I lost him to Cancer, I became a caregiver to two small children and my husband at the same time.
I was his whole life! His parents were in Norway and only came down for the his last few weeks, I thank my mother (again!), for been there for me. She took care of the kids when I needed to spend endless nights in the hospital and during his lasts days when he requested hospice care at home to die with dignity in his own bed, my mom stepped up again since I didn't want the kids to see their 6'6 formerly 225 lb. Daddy, look like a skeleton now at 130 Lbs :-(
It was sad........ but as a caregiver I can tell you all that if you have a love one right now taking care of you, be grateful to them. I know that we get frustrated sometimes when they don't show us love or attention, etc..., but have any of you stopped to think that this person that loves you and is taking care of you so well or to the best of their abilities, also feel very, very overwhelmed themselves???
Think about that, and be a bit patient with your caregiver, OK?
Hugs,
Tipper
Thank you for adding your "story" and giving us YOUR viewpoint on being a "caregiver". It is a very nice "message" for all of us to remember.
Take care!
Hugs & More Hugs! ~Carrie