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
First I'd like to welcome you to the chronic pain support group!!!! I've only lost one friend due to my health issues. She actually called me a drug addict. I only was friends with this woman for about a year and a half. I was more friends with her husband. He passed away Dec 08. Our girls are best friends. I showed her more support than her so called friends and family. Even went to Mexico with her to spread Wayne's ashes. That's a whole different story. She is an acloholic. I don't drink and was getting very tired of that anyhow. I had my 2nd spinal and hip surgery in Oct of 08 and Nov 16th 08 I had a massive heart attack. Yes, at first she showed me and my family some support. I almost died 2 times in the hospital. I am here by the grace of God. When I finally came home I had very low blood pressure and had to be monitored 24/7. I was taking 21 different heart meds and they made me sleepy. The pain meds had to be cut way down because of my heart. So she thought I was taking too many pain meds. Got a very nasty email from her just 3 months after I came home. She wanted me to come over to her house and I said no. Boy did she go off on me.
So she was not the friend I thought she was. I have 3 best girl friends that I have been friends with from 32 to 22 years with and I have 3 guy best friends That I have been friends with for 32 years. We all grew up together.. I am truley blessed. I also have a great family that support me all the way. I lost my Mom in March of 06 due to a massive heart attack at the age of 60. Both of my parents have heart problems. I also lost my Father N Law of 22 years the day before my 2nd spinal/hip surgery.
I'm so sorry you don't have the support that you deserve. Most of all by your Mom. I have somethin I'd like to share with you. Dr Orange informed us about this T-Shirt on the support group. You can look it up but you will have to go back a bit. I just had to buy one. It reads:
13 things You Don't want to Say to Someone With Chronic Pain
You Don't Look Sick
Maybe If You Just Got Out More
You Can Learn to Live with it
You'll just Have to Tuff it Out
It's All in Your Head
Your Just Having A Bad Day
This Will Pass
Just Get More Exercise
It Can't Be That Bad
It Must Be Neat Not Having To Work
Just Be More Positive
It Could Be Worse
There's People Worse Off Than You
I Won't Be Responsible For My Actions
How many have you heard? I've heard them All. I worn this to my Dr's appt on Monday and my pain Dr got a kick out of it!!!!
I'm with you!!! If you ever need to talk or just vent, I'm here for you. You will find alot of support here and meet alot of good people. I hope your pain eases up for you. All we can do is HOPE!!!! Big Gental Hugs, Peach
P.S. Feel free to stop by and read my profile.
But that's why these groups are great! You can vent all you need and everyone here will totally understand!
pain free prayers
Brad
I rarely discuss my pain with ANY member of my family. Certainly not my mother or father. I may mention that my migraine is worse than normal, so I do not want to talk on the phone today, go for a walk, or can't whatever and WHY (or whatever was up that particular day) but I RARELY go into detail.
I NEVER EVER discuss my MEDS with ANYONE other than my doctor, nurse and pharmacist. (And this group.) I got burned VERY badly by two people I thought I could trust.
One, by someone I THOUGHT was a friend. I told her the meds I was on, thinking I could trust her. She took that information, and ENAHANCED it (by adding that I also used heroin, which to HER seemed about the same (I DO NOT use heroin btw) and told about everyone I knew. Second, by an other "friend" I thought I could trust, who I subsequently caught TWICE rifling through my belonging looking for pills to get stoned.
People who do not deal with CHRONIC pain DON'T KNOW. They either are interested (in an unhealthy way) because they think what you take gets you "high" (and they either will use that falsity to hurt you, or steal your meds) or they just don't believe anyone could be in that much pain. OR they get frustrated, because they LOVE YOU and they can do NOTHING to help you.....
I have to agree, once a week talking about pain with ANYONE (save this group) is probably too much. I don't even mention my pain to my HUSBAND (the person I trust more than ANYONE IN THE WORLD) that often, except in passing. It is certainly rarely a topic of discussion in our household. Why should it be? There is NOTHING he can do, he KNOWS I am in pain, and the frustration of NOT being able to help me hurts him if I mention it too much (not to mention IF I were to mention it a lot, I cannot imagine what I pain I WOULD Be, then I am a High Maintenance Woman to start out with, he doesn't need daily or weekly reminders that I am in Pain that he can't "fix" on top of everything else. He knows what I am going through, I see no reason to mention it frequently for any reason.
You have to look at if from THEIR POV. THEY aren't in pain, it is not that they don't care, it is just that people begin to feel VERY HELPLESS and, yes, they check out. (I had to do the very same with my OWN mother, who has myriad health problems, (many of which are the result of her tobacco, alcohol, sleeping pill and tranquilizer filled and NO movement or exercise lifestyle, which she refuses to change) which she uses to manipulate people to feel sorry for her, to do things for her and for the Guilt Factor times 100000000!)
I am a Pain Patient and HAD to tell my own mother: "NO MORE SICK TALK!!!!" In addition to her own issues (which would change from week to week depending on how much she needs from others) she also usually added what my husband and I called "The Cancer Report" or her updates of EVERY SINGLE PERSON SHE KNEW OR RAN INTO who had the least injury or illness, IN DETAIL! I had to also check out from that. It wasn't healthy for ME to have to listen to, and certainly not healthy for HER to continually repeat over and over.
Being in Pain can certainly be lonely. It is NOT like cancer or a visible disease, and most people misunderstand it. We CANNOT EXPECT THOSE AROUND US TO UNDERSTAND. We also have to learn not to saddle the HEALTHY with constant complaining. Our loved ones cannot FIX us, and even if we don't say so, often constantly talking about our pain IS a form of ASKING to be rescued. And as rescue is impossible, it puts our loved ones in a terrible bind.
Talking with your doctor, your nurse, your pharmacist (if you find a good one, like I have done) and joining a group like this, either online or in person (if you are lucky enough, I wish there were one around here in person) is really the best we can ask for.
Save the "sick talk" for when it is REALY Bad. When people hear about our pain regularly, they become NUMB to it. You can't blame them, there is only so much "support" others can give, and they get frustrated. They KNOW you are in pain, save the discussion for RARE occasions. And yes, once a week is IMO, TOO often for discussions with other people about something they know NOTHING about and can DO nothing about.
I know with my own children, I always want to FIX whatever is wrong with them. I am sure your mother cares about you as much as I care about my children. BUT, even my older kids had to tell me, "Mom, you can't fix everything. Stop trying." I want to Save them all the time, and I CAN'T. It is SO maddening to see your own children in pain, even for a short period of time. I think your mother "Checked Out" to save herself and maybe even to help get YOUR mind off of your pain. (It probably didn't work, but sometimes we BECOME our diagnosis, and taking our pain as our Identity is NOT healthy for us.)
Your relationships with others will improve if you stop using them as constant sounding boards.
I am sorry you felt hurt, but your mother has feelings, too. And I will bet she just got frustrated by NOT being able to help you and said ENOUGH!
We are here, we won't tire of your stories. Your doctor is there to treat you, let your family have a rest.
Believe me, I know.
PGell,
I appreciate your post, but obviously you are entitled to your own opinion. If you can get through the day and feel that you do not need to talk to anyone in your family, then that's great! But there are others, like me, who NEED support from my family. Let me clarify that I was only talking to my mother in the early stages after my 2nd surgery. She knew I already had a history of severe depression and also knew I had previously been suicidal. Knowing all of that, when severe depression set in again, she just wasn't there for me, no encouraging words to help get through the day. On top of that, she abandoned me. After the 2nd surgery, I had suicidal thoughts once again, however, this time was a little different because I now have 2 children I am responsible for. They are the only thing that's helping me to hang on, to get through to the next day.
I guess some of us just aren't as strong as you. I have always been the best friend anyone could ask for and also the best daughter my mother could have had, but I have still been abandoned by most and it makes life very difficult. Even though I have a husband and 2 kids, I feel very lonely alot of the time.
I believe that having family & friends is very important and helps to fulfill peoples lives. I do not think that leaning on them from time to time, due to my illness/pain is in any way making them "unhealthy" and shame on them for not understanding or showing any type of compassion!
I look forward to getting to know all of you in the Community. I am sure that this is what I have needed all along. People who care and can fully understand what I am going through.
Take care everyone! I hope you have had a better day than yesterday and hope your tomorrow will be better than today!
Hugs & Blessings to all! ~ Carrie
She is always asking me about my back and how somedays i look to be more pain than others.
After taking her to doctors appointments all the time for years until she learnt what i was going through.
Now she is great.
If i cant do anything she will.
Welcome to our group and I am very orry that your mother does not understand your pain.... Like you I believe that we need family support when we are going through things like we are. Been all alone and with chronic pain can only make us bitter and hurtful and I won't allow that in my life!!! So I am glad that the hubby is there for you.
My Mom and my sister's are the biggest support system that I have! Plus I have all of my Nurse friends ( I used to be an ARNP) that support unconditionally also!!!
I posted a letter called "A Letter to Normals From Someone in Chronic Pain", I am going to find this letter and bump it up for you. Make a copy of it, and send it to your mom via regular mail, and see if this will open up her heart. I truly hope that she will open her heart to you!
What is it that bother's her?? Your medications? What??? Our family members and friends do NOT need to understand our pain, but we want them there for support. If she ever comes around, try not to talk about your pain to her.... wait until she asks you about it, maybe that way it will be on her terms, if you know what I mean...
Doctor and Nurses are great to see and talk to during our appointments, but we need our families and close friends to support us during this journey, so let's hope that your Mom will turn around! BTW, I am 49 on SSDI and had 4 spinal surgeries, including one to installed a spinal cord stimulator. I walk with a cane or a walker, depending on the day! But, I have learned to take this whole pain thing with a grain of salt and with my glass half full, because like my PM says, "an angry and impossible CP patient is a patient that he will run away from!" LOL!
Take care hun and look for the letter, I will bump it for you! :-)
Thank you very much for your kind message! I appreciate your support on this subject and I am so glad that you have such a great support network! You are very lucky. I hardly have anyone, just my husband and one friend (whom I don't hardly ever see) and my husband is not "supportive" in the way I need it the most. Sure, he takes me to my doctors appts when needed and helps to take care of the kids, runs errands, etc.. but never just gives me a hug or kiss or tells me he loves me. We have been together for 16 yrs & married for 13 yrs. I'm sure he loves me but he never shows it. I have talked about this with him countless times but it doesn't change anything. Things seemed to change after my 2nd back surgery. This is the reason I feel all alone, cry all the time and am severely depressed.
I don't feel sorry for myself and tackle each day the best I can, but it is very difficult when you don't have ANYONE to show the support you deserve. I know if it weren't for my children, I would have ended things to be with my father (who died 5 yrs ago). We were very close and I loved him very much. My heart still aches for him.
Thank you for posting your "letter", however, I think in my situation, it is too late to reach my mother. Her and my stepfather have said some very hurtful things. I have come to realize that her actions over the last 3-4 yrs have been building up to this. She would say "there are people who are worse off than you". I am sure there are, but this is ME, YOUR DAUGHTER, and we are NOT talking about OTHER PEOPLE! Some people I have talked to think that she shut me out because she couldn't "accept" that I was going through such a terrible ordeal and that she probably felt helpless to help me. I even made it clear to my mother that I DID NOT EXPECT her to work a miracle for me, I just needed her to "listen", and she couldn't even do that. She is living in her own "little world" where she cannot accept any conflict or anything else that she doesn't like.
I have 2 brothers, 1 younger & 1 older. Neither of them show me any support either. Neither of them EVER asks me how I am feeling and my older brother has been a NURSE for years! Tell me that isn't hurtful.
Anyway, I am so sorry to ramble. Please know that I KNOW that there are other people who are going through what I am going through and that there are people who do have worse problems than my own. I am here to support anyone who needs it. If anyone needs to talk or vent, please contact me and I will be there for you.
Hugs & Blessings to all of you! ~ Carrie
I am soooooooo sorry! And you are not rambling! You are just expressing your feelings and that is what this site is for. We are not here to put anyone down or beat them across the head! We are here to support people like us in CP.
Have you see a Psychologist or someone for your depression? I think that it might be a good idea........ It might even be good for both you and your husband to go together, maybe things will change with the help of a third party. Lots of hugs to you and I hope that I can help you in any way that I can. Take care and lots of soft hugs,
Tipper
I used to see a "Pain Mangement Psychologist" until he retired almost 2 yrs ago. I just saw my family doctor today and asked her for a referral to see a "regular" Psychologist as I already know that the former type are not available in my area. At this point, I think it would be beneficial to see SOMEONE, especially with all of the mental anguish my family has caused. My doctor is forwarding my information on to this Pyschologist to see if she thinks she can help me. I hope so.
Thanks for caring!
Hugs & Blessings! ~Carrie
I am glad that you are going to go to a Psychologist, it would be better if it was a pain management one since they know more about what "we" go through as people in chronic and/or intractable pain, but any Psychologist right now is better than none for you! Just keep on hanging in there and you will get good support here, just disregard the mean people and just listen to the ones that give you real support from the heart. Take care hun,
Tipper
You are wonderful, and I'm here on this group, but this is the first time I've typed anything here, but I want you to know, I am a great listener. Call upon me ANYTIME!
Love and Light! Hunter
My family knows of my pain and I get mixed reactions. My sister told me to get over it., She said she has back pain SOMEtimes so bad she has to crawl to the bathroom. My pain is 24/7 not the same thing at all.
I dont tell others very often at all anymore. I get the deer in the headlights look and or, You must really like the good drugs you get.
Yes, I love the constipation and the hole they burn into my stomach. I love not thinking clear and being under the scrutiny of Dr.s and other medical profesionals. I love the fact that they make me nervous and depressed, And I really love sitting home all day because I hurt too much to do anything.
Oh yeh, You look fine to me.
Anyway, keep reading and writing to this list. We all understand. We wont judge you.
Yes, I have lost many friends due to my pain. Im not much fun anymore.
Hang in there
Vicki
One cannot make people be someone who they are not, and those around us can ONLY take so much "sick talk." It has NOTHING to do with my "being strong" it has to do with reality. NO ONE UNDERSTANDS except other pain patients. It is NOT my right to shove my issues onto my family.
I have to ACCEPT that I cannot change people, whether that be my mother and her issues, or my husband, or anyone else in my life.
Wishing people were different than they are, or having a fantasy that people will "Change" or that we ourselves are perfectly accepting and tolerant of others or the "perfect" anything is a fantasy.
One thing that we HAVE TO DO as Chronic Pain patients (I have been in Chronic Pain for about 25 years, and I am barely over 45 yrs old) is to accept that our pain is OURS, to be able to OWN and manage our own pain, to not make it our Identity, and that we cannot expect people around us to stop their lives and have THEIR lives revolve around our pain.
People only have so much Internal Reserve. Your mother is burnt out, because she has HER OWN issues to deal with, and at times the "Sick Talk" is more than she can handle. You CANNOT expect more of her than she is capable of giving. You cannot expect your husband to be a different person than the man YOU decided to get married to. (was he affectionate BEFORE you got married? No? Did you expect him to change when you signed the marriage certificate?) People DON'T CHANGE, but they DO get tired and burnt out...
As CP patients we HAVE to develop stronger Internal Reserves than those around us. Why? Because we CAN'T expect them to face and "fix" something that even WE can't handle. It just isn't fair.
Your mother had HER OWN problems and her own life, yet you get upset when she runs out of Internal Reserves. Is it fair?
WHERE is SHE going to get those Internal Reserves? People only can give so much.
I am NOT a "perfect" daughter, nor am I am "Perfect" mother, I am not a "perfect" wife. I am NOT a "perfect" friend. NOT by a LONG SHOT.
I do my best, but my own issues have to be dealt with. I never take on more of other people issues (with the exception of my children's problems, WHEN THEY WERE VERY YOUNG) than I can handle. I have my own limit of Internal Reserves, I can't expect others to handle ALL my problems and still have the energy for their own.
My own mother insists that she "always" is there for other people, that she is the "perfect" friend etc. She isn't. No more than anyone else. She says this so that others will DO for her, even if they are OUT of Internal Reserves. It just isn't fair to think this way.
Being there all the time for a small child is one thing (believe me, I breastfed my children, who didn't sleep through the night until they were over 2 years old, for YEARS apiece, stayed home, at great economic loss, and did ALL for them, I KNOW giving until you have no more, and to keep going.) but doing such a thing or using that much energy FOR AN OTHER ADULT, who needs to develop more of her own Internal Reserves is just too much. It is normal and healthy that people need to Check Out. We CANNOT expect too much from them. This is OUR PAIN and OUR FIGHT.
*sigh* I am sorry you feel abandoned. We all come into this world alone and we all leave it alone. With the exception of the Presence of The Lord, for the most part we ARE alone.
I LOVE my husband, my children and my parents and friends, BUT, my internal struggles are rarely their responsibility. Mine and God's. He has more Internal Reserves than any human, so He can listen when my family and friends either can't and probably SHOULDN'T (because my problems are often VERY private.)
God Bless You.
I am not trying to be cruel, only realistic. I know how much people can take. I think we should all think twice about what we expect from others.
I am only trying to play "Devil's Advocate" and speak for the Normals a little. Please, they have feelings, too. Even though they don't have CP. They hurt, too. And our Normals Can't be expected to always be there for OUR pain and for us. It's too much for US sometimes, think how they feel.