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Guilt and Frustration around my Invisible Chronic Pain

Does anyone else experience a degree of guilt around their chronic pain? Do you struggle with the invisible aspect of chronic pain and other people forgetting that you have a real, viable physical challenge that impact your life every day?

I have to grit my teeth and grid my aching loins every time I have to ask my partner to load the dishwasher, because I simply can't bear the pain of bending over to put that damn plate in the dishwasher drawer! I detest having to be "helpless" and it is probably been one of my greatest on -going personal challenges.

I have also struggled with asking my family to leave a party early because I am wiped out and gritting my teeth in pain. So many times in the past, I would say nothing ,grin and bear it. I am now less willing to just tolerate. However there is still nasty , annoying gremlin voice that plays the guilt card.

People who don't know my story assume I am healthy and strong because they don't live in this body and my scars are hidden by my normal looking attire.

I find people sometimes forget that this fire dragon lives in my body, breathing flames 24-7. Sometimes I feel it would be easier to be missing a leg so my physical issues would be considered legitimate.

Friends have gotten pissed off at me in the past, because I have backed out of social events at the last minute. I now let people know in advance that I may not be able to show up if I am having a bad pain day. My marriage ended over the issue that my husband at the time, not believe I was really in pain after 5 plus surgeries, and would ask him for help or to pass on a social event.

I am curious if other people have experienced these challenges and how you deal with it.



  • Wendy,
    Do you still drive? If you are going to a social event where your family may want to stay when it becomes to much for you can't you drive yourself home and let them stay? I often will let everyone know that their ability to have fun and enjoy life should not be impacted by my issues and condition.
    It is dificult to ask for help, I am very guilty of trying to do things myself out of not wanting to burden anyone else. That is something a lot of us has to get over is asking for the help we need and letting those close to us have a life. Just my 2 cents.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • This is just my opinion, but if I'm in so much pain that I have to leave an event, then I believe I have no business driving. When I'm in that much pain it is nearly impossible to concentrate on driving. Legs give out or arms don't work right. I would just as soon stay home and alive.

    Now if you are able to drive no matter what this is a great idea!
  • Hey Wendy, Im so sorry sweetie at what the chronic pain has cost you. I feel the same way. I have always been so independant and to ask anyone to do anything for me is nearly impossible:( What hurts more sometimes is when they know you are having a bad day and you have to ask them for help instead of them just doing it. I always feel guilty that my family gets up and goes to work every morning and after going to bed at 5am or later I sleep late into the morning trying to get some rest. I have friends who make bets on whether I will show up for dinner with the girls:( That really hurts especially when they have seen how much I can suffer at times. My marriage of 28 yrs has suffered from my chronic pain along with my husbands heart problems. He does not deal with either very well, but I believe the vows I took to be for life. I try to keep in mind that I took care of him for 6 months after his heart surgery and would do again if needed and I would hope he will continue to support me as well. At least you know you have lots of friends on here who know how you feel and can help. Just venting on here helps me so much. My son broke my heart the other night when he said...."Mama we never smile or laugh in this house". After crying forever I decided I would start with myself and change that and I make sure they see me smile and laugh at least once a day...lol Please PM me whenever you feel down and want to talk:)

  • I do understand what you're talking about, absolutely. Living with a person in pain sucks, period. When I'm the person with the pain, I feel horrible that people have to worry about and work harder because of me. Truly horrible, like I am ruining their life somehow. If a person is recovering from surgery, it's easy to care for them because you know there's an end in sight. I can't promise them that, and they must wonder if this is how their life is going to be forever...worrying about me, having no fun because of me, working twice as hard because of me. Ugh. Ugh. Ugh.

    I think I have at this point decided that the guilt hurts worse than the rest of me. Nowadays, I just tell my 3 kids that I am "not hurting today!" if there is any way I can fake it at all. I decided I just don't want them thinking of me as unable to take care of them (even though they're about grown, with my youngest at 15 and my oldest 22 but at home) or as an unhappy person. That's not the way I want them to remember me later or think of me now. I would rather have them thinking of me as lazy, so I sit when I have to and tell them to bring their video games downstairs so I can sit and watch them and visit with them. I am a little more honest with my husband, of course, but I try to minimize it as best I can. He does so much and asks so little of me that I figure I can at least spare him some worry. Plus, after 25 years, he knows me. We just moved into this new house and I have been couch bound since...he has done so much and yet he brought me home a dozen roses yesterday because he knows I'm so disappointed to be unable to help right now.

    We went to Myrtle Beach earlier this year, and there was some difficulty getting my medicine refilled (I thought since it was a national chain, it wouldn't be hard, but each state apparently has its own rules on hydrocodone), and my youngest son got so frustrated because I was taking up the whole day dealing with it (the ocean beckoned loudly ;), and I felt such guilt I about got sick. I also felt shame...I didn't like the kids knowing that if I didn't obtain medicine, I would not only hurt but I would get all jibbly from withdrawals at some point. I felt so bad that my problem was now my family's problem. Ugh. That's also another reason I am determined to continue eliminating narcotics from my world as soon as I get past this present flare up.

    As far as socializing, yeah, I let that one go. I have even stopped going to church, but when I return, I am not mentioning my stupid back issues because I swear, that's all anyone knows me for! "Hi, glad to see you, how's the back?". I even took a little job out of the house just to get me back in the world (just 3 hours a day working with in a pre-K class in the public schools) and I am not telling anyone there about my back even if I cannot walk. It's just not worth the trade-off...they can't help, and I don't want them looking at me that way.

    I am a prideful person I guess, and I like being my kids' hero who is fun and funny and always puts them before myself, and I like pleasing my husband by keeping things clean and cooking a nice meal. More than guilt, I feel shame. It affects the way I view myself. With the kids, I have found ways to fake it; with the husband, not so much. I guess the way I deal with it is just shutting up, not complaining, and trying to meet everyone's needs from a sitting position. :)
  • ltstamplltstamp Posts: 39
    edited 08/09/2012 - 5:12 AM
    I read your posts and could completely understand your pain. I will have a great day and do things with my children and then the next day I will be laid up and will be unable to do anything with them. My joy is that my children and my husband are very good about it. If I am having a bad day all I just have to ask my husband and he will help me up stairs, to the bathroom, anything. My son was not as understanding of my pain. He would drive me to my appointments and then complain the whole way home how he had to sit in uncomfortable chairs for 2 hours waiting for my procedure to be finished. I found that so difficult to deal with. He has changed in the last 6 months. He seems like he finally realized that my pain was real and that it takes a great toll from my life.
    When BlueSkies wrote about her pride I could understand since I feel completely the same way. I was always the one that everyone relied on, could depend on to get things done. It was - is so difficult to ask for help. I feel that it is a weakness. I had to learn that it is ok to ask and also not to think that everyone is a mind reader. So when I need help getting up from the couch I call to my husband. I have been so lucky that my husband is such a doll. There are days when I am very difficult to deal with - the pain sometimes make me short tempered and he just seems to understand.
    I also seem to always back out of social engagements. I make sure that I always have an exit plan. Many times I don't even go.

    Like BlueSkies I have found ways to make it seem like everything is normal to the outside world. My husband does everything for me but I make sure that I always show my appreciation for him every day.
  • dilaurodilauro ConnecticutPosts: 9,862
    Wendy, one of the most difficult things (besides the physical aspects) in dealing with chronic pain is the emotional side.
    That can cause more pain and problems then the physical side.

    Chronic Pain (aka The Beast ) is very strange. It can rip us apart, deprive us of sleep, make us sick to our stomachs, etc, but on the outside, there aren't many signs. Walking down the street, someone will pass you and I doubt they will say to themselves, Oh that person is in chronic pain . Same person walking down the street and they see someone on crutches, with a cast, in a wheelchair, etc and they say to themselves Wow, that person must be hurting

    Extend that to the various chores we have to do daily, the functions and parties we attend, or just how long we can sit and watch TV. You dont want to complain, because you feel that by doing that, you are just whining and feeling sorry for yourself... So , instead we keep quiet, keep it to ourselves. Yet at the same time, we felt guilty because we cant load that extra set of dishes in to the machine, we cant stay that long at parties, and we have to get up from time to time even in the middle of a great show....

    Depending how are partner reacts, we can get very frustrated. They get mad because the view it as things that they can totally enjoy because you are keeping them from doing it.

    (Wendy, btw, I hope you realize, that the you in much of this post refers to the general - US.)

    I doubt if we can fix things on the outside, but for within our close relationships, all we need to do is to make sure that there is always an open two level path of communications. We want to tell others what is going on with us and we want others to tell us how that impacts them or how it makes them feel.

    Living with Chronic Pain is never easy

    I, for one, can always deal with the pain and discomfort.

    But its the other aspect of Chronic Pain, the guilts, the frustrations, the impacts to our loved ones, etc that is much harder to deal with.

    Wendy, good luck... just remember to always be true to yourself.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • coyotewildwomanccoyotewildwoman Posts: 130
    edited 08/14/2012 - 4:53 AM
    i appreciate the support, and that I am not alone in this. I have just finished a number of consults with my pain management doctor and neurosurgeon, and based on what they say, there is not much else to do at this point. So the reality of this pretty much being the body I am going to be living in, is sinking in. No more skiing, mountain biking, climbing 14ers. I think twice about walking a few blocks now.

    My new partner has had chronic fatigue for over 25 years, and has accepted the limitations it puts on him. I think I am in the adapting phase of accepting my loss. I am working hard to stay positive, and to put my energy towards helping others in chronic pain and with chronic illness. That gives me a reason to get up in the morning.
    I also have a personal wellness plan I am constantly tweaking.

    I am also going through a very nasty divorce with a husband who thinks I am faking it. He says Stephen Hawking can work full time so why am I pretending and using my constant pain as an excuse to not work full time.. And yes, he did state that he felt I had my double spinal fusion as an elective surgery to require he pay alimony!
  • I too frequently feel guilt for my situation. It is not my fault that my back is such a disaster as I did not do anything to cause my issues. Several years ago I was on disability for 2 and 1/2 years after my colorectal cancer and chemotherapy and returned to work in June 2005. During my disability my now ex wife and I ended up having such a void between us that she turned off and shut down because it was one urgent issue after another. We divorced just as i was being moved to hospice care so i spent about 8 months by myself and NO ONE to help me. My ex was very supportive for a couple of years and then, along with her career demands our marriage fell apart. With in about 8 months of our divorce finalizing, I was able to return to work. I've since remarried and was doing pretty well including back to full-time work when we met and got together. Unfortunately, my now wife is not a compassionate person and deals very poorly with any inconvenience so although she knows I am in pain all the time, I too look "normal' and "healthy" she expects me to participate in life like I am 100%. But, of course, I am far from being okay. I am going back onshort-term disability with the expectation of going to long-term disability when the short-term expires. I am the sole source of income for us so I have lots of pressure to keep working to bring in my salary and, of course, lots of guilt for agreeing to and asking to go on disability because I have not ever asked for help from anyone as I have always depended on myself. I sent Coyotewildwoman Wendy's email to my wife and ihope she reads and comprehends. Good day to all. Jerome
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