New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Jul 2009
Total Posts : 278
   Posted 2/4/2010 1:32 PM (GMT -6)   
Just wondering how everyones families, spouces, partners, kids, etc... deal with your CP?
Do you feel guilty? (I do)
Do they help you? Do they not believe your pain?
Let me know!
My husband says he understands, but I know he dosent. I feel like a whiner all the time so I try not to say anything. My kids are a great help around the house... they do what ever I ask them, no questions asked.
My mom completly understand and wants to come do stuff for me all the time.
Tethered Spinal Cord
1.5x1.2 cm spinal cord cyst at L5/S1
  (Lumbar Laminectemy completed 9/10/09)
Leg Deformity
Foot Deformity 
Knee Pain
Hip Pain
Back Pain
Neck Pain
Severe Depression
Artheritis (Spine)
Spinal Bone Spurs
NEW: Herniated Disc T5/T6
"I'm not going to vacuum 'till Sears makes one
you can ride on"
~Roseane Barr~

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 2/4/2010 2:02 PM (GMT -6)   
My family is very supportive and understands very well what it is like to have pain. They are all very caring and compassionate! I feel very fortunate to have them. They are really all I have that makes everything tolerable. And they are all right here on this Forum!

I have no physical family close by, and my soon to be ex did not believe that I had or have pain. She accused me of playing it up in front of the judge by walking bent over ans shuffling and grimacing, when we went to a divorce hearing. She told me that I was not in any pain, it was all an act and always had been! It was only a couple of days after that, that I was told I needed to have a second ACDF at C-5/6 to relieve the pain in my arm! She never did understand or believe the pain I was in, or even why I was put on disability. I often wonder if that didn't play at least some part in the down fall of our marriage!

Pain is something that is very difficult for others to understand and sympathize with unless they have experienced it!

White Beard

Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 2/4/2010 2:40 PM (GMT -6)   
I am very fortunate to have an incredibly supportive and helpful husband...he's actually the one who sometimes has to stop me, look me in the eyes and tell me I'm overdoing things, etc. He knows me better than I know myself. He takes care of all the cleaning, most of the cooking and whatever else needs to be done around here. He's an angel and I'm not sure how I'd manage without him.

My kids are grown and on their own, so I don't have to worry about being a "daily mom". They understand when I tell them I'm not up to visiting or chatting on the phone. They live in Calgary near me, but we often keep in touch more on Facebook than in person. I'm also surrounded by great friends who certainly have seen me at my best and worst painwise. I'm active in my church and belong to a Small Group, so that's another source of strength for me.

I can't imagine what it would be like to not be believed or supported when you're in pain...I simply can't get my head around that. I am so, SO happy these forums exist, so others with CP know there is a place to go for support and caring.
Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines
(plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Nortriptyline
Other: Vitamin D, Multi-Vitamin

Veteran Member

Date Joined Jan 2010
Total Posts : 3557
   Posted 2/4/2010 3:03 PM (GMT -6)   
I have a wonderfully supportive mother who also suffers from pain/surgery issues with her back. My older brother...not one bit of support..he doesn't have a drop of emphathy in his body...I love him dearly and accept that in him..I go elsewhere for support and just don't mention it when I see him/talk..

The reason I am so happy to have found you all, is that I really never talk to my mom about when I am hurting because I just don't want her to be worrying about me as she would do. She is retired and not in great health so I don't like her having anything negative in her life if I can help it.

We do talk everyday by phone and chat about politics, tv shows, etc...and laugh everyday together...

I have amazing friends in my apt. complex who help walk my dog if I'm having a bad day...and loving friends from my church who love and care for me and even though they don't suffer chronic pain..they do empathize.

Like White ex husband...partly why he is an ex...could care less when I was in pain..didn't think twice about it...The last straw was I fell down the stairs a month after my last surgery..and he barely blinked and left for a weekend golf party at our friends..

It's so great that some of you have such great spouses...and hope that those whos family/friends are not supportive...keep coming here for us to show you some love!!!
**Just wanted to add that I have also learned that pain is 'relative' and to not forget to ask my friends how they are doing..twisted ankle, having really bad flu, sore elbow, etc...that even though I have chronic pain, that I don't compare myself to them or think.."gee..I am so much worse than them"..I want to offer my support for what is hurting them too and to's a huge deal and lots of pain...

SB and "the pup who snores loudly"
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha"))
ACDF with hardware, allograft bone Nov. 2005
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Dec 2006
PM since 2006

Post Edited (Snowbunny21) : 2/4/2010 1:33:46 PM (GMT-7)

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 2/4/2010 3:27 PM (GMT -6)   
   Well for some of us it did not come so easily. Mine was not at all supportive, until she hurt her back and was forced to take pain meds. Then she got a pretty good idea of what I might be going through....especially since she realized that I had multiple injury's. I think co/workers can be the cruelest of all though. I understand anyone going through this, and in fact many of us showed up here because of it. It is a fact in our world, so none of us should be suprised at it. Now all that being said, I have to stick up for the spouces and friends who do know..or atleast try to know what we are going through. Many of them pull double duty in many areas of our lives...with raising childern, work, cleaning...and I could go on forever with the list. This is one of the many reasons that we come is a lonley thing to live with at times. One final thought...I have to always Thank the Moderators they are even pulling more weight...and I need to mention that many members here are pulling their weight to help all possible...they know who they are! We need all the help we can get here...and Im very greatful for the members that give all of their time to help us. They have done a great job of it.  We are family, and we may not all agree or be the best of friends, but there is a coman understanding of care for one another. I know that sounds like an Oxy/Moron, but not meant to be :)

Forum Moderator

Date Joined Feb 2003
Total Posts : 16797
   Posted 2/4/2010 3:30 PM (GMT -6)   
It is not uncommon at all for people not to understand our pain or anyone else's for that matter. It is not something physical that you can see. If we had gaping wounds with blood gushing everyone would know why that person is hurting.. My husband is very much aware of my pain but that does not make him understand it any better. He himself has CP in his legs from blood clots and poor circulation. He has not ever accepted his own pain, so no way he has accepted mine, lol. But, that does not mean he loves me any less either.  On a decent day other than an oxygen tank and cane you may think I am ok. Never judge the book by its cover.
Guilty, oh yes I use to feel very guilty because I was the one that was responsible for most of the things around the house, because he was truly at times not able to help. I took care of him. So, when my health went south it all changed, I was unable to care for us both. However, I admit I am much better at helping someone else than myself. Guilt is normal, its another step we take with CP.
My children are grown. My daughter understands more than anyone connected to me. Then I have the family here at HW that I share my woes with, this is where I talk about what it going on. But, I try to hide it all from my children because I do not want them worrying over something they can't control. My son tries his best with me to the point he just gets on my nerves at times. He is one that yells don't bend over and pick that up, don't do this or don't do that. That gets on my nerves, I just told him one day, I am not an invalid and you are not going to make me feel like one either, He backed off, he realized he overstepped his bounds, lol. But they are both caring.
Remember the old saying "it takes one to know one", well that old saying applies really well to CP. The ones that really understand are the ones that live it every day.

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Veteran Member

Date Joined Aug 2009
Total Posts : 928
   Posted 2/4/2010 6:50 PM (GMT -6)   
The support I get from my family is kind of 'hit or miss' (for lack of a better term!). My fiance (who has some pain issues of his own) lacks patience at times, because, while his pain is more localized (lower back), and recent (2 years), mine is more complex. I have abominal adhesions and DDD in my cervical spine - the pain from these two issues have been ongoing for years (20+). However, recently, I have developed pain in my lower back (excruciating), my left elbow, knees, tooth/jaw (OMG, worse than childbirth!), and other areas. My fiance's attitude is, "Geez, what next?, What is going on with you?, More pain?, What's going to hurt next?" smhair Well, I would LOVE to know the answer to all of those questions! My mom hates to see me in pain and gets frustrated that it doesn't 'just stop'. She can't figure out why I don't get better. I can't expect her (or anybody else) to understand what I can't understand myself! Overall, my family supports me the best that they can. My kids are wonderful and are always willing to help me when I ask (ok, sometimes only after a bit of eye-rolling and making me feel like I am costing them YEARS of their lives in exchange for 10 minutes of helping me! LOL). Also, I hide alot of my pain, mostly because I get sick of hearing my own whining! rolleyes 

Post Edited (Splashdancer) : 2/4/2010 4:58:32 PM (GMT-7)

Veteran Member

Date Joined Sep 2008
Total Posts : 1670
   Posted 2/4/2010 7:33 PM (GMT -6)   
Hi Donna, My family are very loving but they forget at times that I'm in pain. A bit of denial creeps in and I let it go, I don't want them to forever think of me as in pain all the time. My hubby is really good but works long hours, he helps alot. My kids help with coersion and bribery to do dishes or clean fridges, they're pretty good, but I have to constantly remind them to take their dishes out, don't leave cups on the floor etc.
I feel guilty sometimes, I hate not being able to be physical with them anymore, play soccer with them. I do what I can and sometimes pay the price. Sat on the beach and really struggled to get up again, can't manage the waves anymore but I can do the pool.

I think denial is a big part of coping for them too. They don't want to think of me as disabled, my 10 year old gets upset if my husband brings it up. I keep how bad it is to my doctors ears only and you guys of course. Hard to come to terms with it myself never mind expecting them too.

How are you coping,Donna, how is your family dealing wth you and your pain? Golitho

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 2/4/2010 7:50 PM (GMT -6)   
   Dear Donna,
      Good evening. It is good to hear from you. I am sorry that your husband doesnt understand sometimes. Are you doctors sensative to "whole family wellness"? I ask because what helped my husband the most was being able to talk to my doctors one on one and to ask pointed questions about my various conditions, problematice areas and future prognosis. After that he became an intrigual part of my over all wellness and medical care. It helps tremendously when there is open communication between the doctors and family members. Perhaps, if you can, have your doctors and husband have a "sit down meeting" schedualed, so he can talk freely and ask questions that he may have reguarding your health? Just a thought.



Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood



Regular Member

Date Joined Oct 2009
Total Posts : 453
   Posted 2/4/2010 7:59 PM (GMT -6)   
I am incredible lucky to have the support of my husband, our daughters and friends. Kenny is the one who reminds me to pace myself and does extra on his own so I don't have to worry about making another trip downstairs to the laundry, the store, etc. I don't know what I'd do without everyone. This sight is another godsend that I feel blessed with everyday. This second family is the most compassionate I've ever found and I thank each and every one of you even the ones that I know don't like me very well....

Regular Member

Date Joined Feb 2009
Total Posts : 42
   Posted 2/5/2010 8:23 PM (GMT -6)   
i have fibro, so does my uncle. my family and people around me have no idea what its like and they do not understand it at all, it's very frustrating at times. but i don't really know how to explain it too them.
depression/anxiety/fibromyalgia - 2000
diagnosed - 2008

medicine - none.

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 8:48 PM (GMT -6)
There are a total of 3,006,282 posts in 329,322 threads.
View Active Threads

Who's Online
This forum has 161825 registered members. Please welcome our newest member, TheRayf.
320 Guest(s), 13 Registered Member(s) are currently online.  Details
JayMot, mattamx, Admin, Girlie, BillyBob@388, Sherrine, Healing98, Saipan Paradise, tairr, Y o g i, Normal59, straydog, PDXtransplant