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  • Scolosis and Marriage

    The message I would like to send has to do with: What is the effect that severe scoliosis in women has on dating and marriage. I am severely deformed due to a severe curve of 125 degrees and rotation of the vertebrae, which has caused the ribs on the right side to protrude to form a large rib hump. As much as I try to minimize the deformity with the type of clothes I wear and a padding on the other side, I have not been successful in attracting men. I have reading message on your site and noticed that many of you are married. I am surprised, but wonder where and how you have had success in finding a partner. And I wonder, as well, if I am a “victim” of cultural preferences. I am a black woman and many people have told me that black men are less tolerant of physical abnormalities that other men. ( I have also read that people with disabilities in China face more discrimination that in Europe and the US).
    I would like to send you some background on my life and if you have the patience to read this long post and comment on it or give me some advice I would appreciate it.

    My Scoliosis and thought about why I can’t have a serious romantic relationship
    My name is Donna and I have Idiopathic Scoliosis. As a result of severe curvature and twisting of my spine, I have been left to live a life with a severe deformity, albeit without pain or discomfort, but with a rib hump on the right with stunted height. I am 4’ 11’’. I estimate I should be at least 3 or 4 inches taller. I have never been married or even asked out on a date, except a few that were totally platonic. These were not romantic encounters. No man has ever been attracted to or has approached me as a woman. I think this is due a complicated set of factors that have to do not only with the deformity, but also that I am black; two serious liabilities on the “marriage market”, at least for me. I will explain why below.
    First, a little info about me:
    I have a college degree with a double major, music performance (as a pianist) and music education. I worked as a high school music teacher for 35 years and am now retired.
    I have a teaching endorsement in German, as well as being certified in Music with the State of Illinois. However, I have never had the chance teach German because I retired soon after submitting the requisite credentials. The interest in German evolved over several years partly due to my training and involvement in classical music. Here is an ad I found on the internet placed by a young woman stricken with scoliosis. (27 yrs old, married, one child. Home based business owner/Independent Marketing Executive. Disabled due to severe scoliosis and looking to make a difference in the world.)
    My thoughts and questions about this woman: The first is surprise that she is married and the second is how and where did she find a husband? My conclusions and the basis for them: (Some people might find some of what I am expressing here as surprising and unbelievable coming from a black woman, but I must write and express what I have experienced and feel to be true, right or wrong).
    She is probably white, which would have made it easier to for her to find a mate. On what do I base this assumption? I believe that a white woman with a deformity such as mine has a better chance of finding a man she can love and will love her in return than a black woman with a similar condition. I was often told as a young woman and by several people, (some of whom were black, including my mother,), that a black man would most likely have less empathy or compassion for such a woman. He wouldn’t bother getting to know her as a person. Most don’t or wouldn’t have a shred of understanding or curiosity about a woman beyond what she looks like. They wouldn’t see a woman with a physical flaw such as mine as having any value. A psychologist I was seeing about 30 years ago said she thought there might a core of truth in these assumptions. Why that should be is very complicated and I really don’t understand it. I thought and she (the psychologist) agreed that perhaps due to social and historical factors they are in greater need (than other men) for validation and to make an impression by the possession of external (material) assets, including nice clothes and cars and most importantly, a woman, who makes a great physical impression. Even my own brother agrees with me, and he is, of course, a black guy himself!!! Most men, I guess, are that way, but I believe there are probably more exceptions among white men than among blacks. I mentioned in the first paragraph a few “platonic outings” The 2 or 3 men who did take me out were white men, charming and intelligent men whom I liked very much, with whom I would have enjoyed a closer relationship if they had wished it. However no black man has even asked me out – for any reason, not even for a cup of coffee. And it’s not because I don’t talk to them or that I’m not approachable; at least I don’t think so. So, I would ask anyone who would consider my above statements about black men unfair or prejudicial , what conclusion or inference should I draw from the fact that none of them has taken me out anywhere, not so much as for a walk. They only talk to me within the “security” of school or the workplace.
    Certain ethnic (non-white) groups (so I once heard in a TV documentary about people who work with the disabled) are less accepting than whites of people with physical handicaps and deformities. My belief that there is a kernel of truth to that has been borne out by experience. My interactions over the years with both blacks and whites have convinced me that that blacks have a greater tendency than whites to judge people solely by the way they look and many people, including blacks, agree with me —the irony is, of course, that being overweight, or even obese, is usually not a social liability among blacks.
    Also my belief that attitudes toward physical disabilities and defects can be embedded in a culture is bolstered by articles I’ve read about China on this topic. In China, and maybe this is changing due to criticism from western societies, people with physical disabilities are not allowed to study in universities and are practically barred from pursuing professional careers. So maybe I’m lucky to have been born in this country. At least in the US, issues of discrimination are addressed and for the most part people here try to do the right thing.
    (So far as worrying about assumptions that blacks (or anyone else) might make about me, I try not to anymore. I often just say to myself, “So, who are they?”)
    And one could hardly expect a white man to date and marry a black woman who also has a deformity. Such a man would have to be practically a “saint”, a person with rare inner strength, confidence, and a healthy self-esteem. The psychologist I mentioned above believed, however, that some people (men in my case) are better equipped psychologically to deal with two or more issues (that I am black and misshapen) than some are with just one (race wouldn’t be an issue with a black guy. (Alas, they still can’t handle it).
    At best, as my aunt Margaret once said to me when I was still in my teens, even if a man did enjoy my company and wanted to be with me, he wouldn’t act on it; because he would be ashamed to seen with me in public or worry about the opinions of his family and friends. Whatever the truth, no man (black or white)—and I have always attended racially mixed schools and as a teacher worked with an integrated faculty —has ever expressed an interest me romantically, maybe an occasional compliment-- but no one, as far as I know, has ever fallen in love with me or thought of me as the woman he wanted to be with..
    I have always felt socially marginalized (not physically attractive enough and certainly not datable) and/or patronized by blacks more so than by whites, many of whom seem to enjoy sharing my interests and attending symphony concerts, operas and seeing plays with me. I have always felt more validated and accepted by white friends and colleagues than by blacks.
    So, unfortunately, not only my deformity but also my interests have often left me socially isolated from blacks as a group. Many blacks I have worked with have thought of me (practically accusing me) of being “not culturally black”, not “culturally correct” enough. But even if I tried to “fit in” there is still the problem of the deformity. So, I figure the best way to live my life is to be and remain true to myself.
    Sometimes it seems like the only "requirement" for attracting a man is a straight body. Men, as my mother once told me, like pretty, (meaning straight) backs. She was right, of course. It would make things a lot easier, if I disliked men, but I don’t, and often enjoy the company of intelligent men with whom I share many interests. Of course, none of them ever ask me out on a date. They don’t see me as a woman, as “datable”, leave alone “marriageable.” I realized very early in my adult years that they can’t help it, that it’s human nature, although I had hoped that maybe I possessed a few assets that would sort of compensate –in the eyes of a man—for the ugliness of my body; but, no, no, no!!! No way!!! The deformity is all they (men) see; it overrides any positive qualities I might have. Most men are simply born that way. They want perfect (that is, not malformed) bodies, even if those bodies are obese. A man will date and marry a woman who is obese, but not one with a deformity.
    No matter how many friends I have, and I am blessed with good and wonderful friends, I will always feel socially marginalized because I am not considered marriageable.

  • #2
    Dear Scoli125-- I just read through your post, and it seems you have poured your heart out to us. I am so sorry that you desire a romantic relationship and it hasn't happened. What you said about black culture re: men not looking beyond appearance, and that their "woman" is an extension of themselves, hence they want one that will impress others, certainly makes sense. But I also have known a cross section of enough men to think we shouldn't lump all together in one category. I am sure there must be at least some compassionate black fellows who would look beyond deformity... just maybe few and far between???

    Above all, I am sorry that so many people in your life have given you such a negative understanding of your self-worth. From reading your post, it seems to me that you are an intelligent, caring person, hoping for a relationship that could go beyond something superficial. To address this, I really need to mention that I know many women who have no deformity, who are fairly attractive and also intelligent, yet who have never "clicked" with someone to have an intimate relationship. Sometimes it just doesn't happen, even with everything going for you. And sometimes it just takes longer than we hope and want... My sister (almost 60) just this year found someone who has shared interests and is caring. She has been in a few long-term relationships in the past that were pretty much one-sided as far as understanding and compassion are involved. Worse than "no relationship" is a "bad relationship." So please don't feel that "if only" a man would notice you, all would be well. Perhaps there is someone out there with whom you would be a good match-- so don't give up. But then again, perhaps there isn't in the circle of places where you spend your time and meet people. Can you think of a place/community service/event where there might be the type of person you're looking for? If I were you, I would focus more on continuing to be a productive person, trying to look at the positives in your life, and wait and see if something comes of that. Also, a good, platonic friendship might prove much more meaningful than a not-so-good love affair that turns sour.

    As far as women with scoliosis finding marriage mates... that is probably as varied as the number of people there are with scoli. Many of us do not have noticeable deformities-- or they didn't become noticeable till later on in our lives. Others have dealt with their disfigurement the best they could, hopefully accepted their own appearance as being ok, and met up with someone who loved them for who they are rather then what they look like. It is so blind to see someone only for their "looks" and ignore their true "person-hood" -- and yet, you are right, it is done all the time. That's one of those shameful things about the human race. Fortunately there are many people who look beyond appearance, which is well-documented by the vast number of people who marry and who are disabled. Or, for that matter, even just extremely homely.

    I wish you well on your quest for a relationship, but again, I encourage you to not get too wrapped up in that and miss out on the joys that are out there in the "right now" -- live life now for what it's worth. We're never promised a tomorrow. Hope this makes sense to you. Take care.
    71 and plugging along... but having some problems
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

    Comment


    • #3
      Wow Donna, you are obviously a well educated woman and a caring person. But my first reaction to your message was that you really feel very down about yourself. Growing up and having your Mother tell you that men like pretty, straight backs, implying that you are not pretty, i.e. not worthy of male attention would be a very strong put down as a girl growing up. No wonder your self esteem is so low!

      Have you considered having your back surgically straighened? Even tho you are not in pain, the stress on your lungs/heart would qualify you for surgery.

      Perhaps you should again consider counseling. I just frankly don't see the revelance of your race and scoli. This is a bit blunt, and all the Asian women out there, forgive me, but who cares what they do or do not do in China??

      SandyC
      SandyC

      Comment


      • #4
        Thank you for the heartfelt responses

        Actually I have consulted with a few scoliosis surgeons here in Chicago I did have a spinal fusion age 12, but didn't get much correction. But I didn't realize until about 3 years ago that surgical treatment was available for adults. However I have been turned down as a surgical candidate by them all, including Drs. Ondra, Hammerberg and Gupta. Probably because I am not in a lot of pain. I do have greatly impaired pulmonary function.
        So I just stopped trying to get corrective surgery, because it was becoming too psychologically draining.
        Thanks for the advice. And maybe I will consult with Dr. Bridwell or Dr. Lenke in St. Louis.
        Donna

        Comment


        • #5
          Don't Give Up

          Donna,

          Here's the lady I wrote to you about. She is having surgery by Dr. Lenke.
          http://scoliosis.org/forum/showpost....0&postcount=62

          Chris

          Comment


          • #6
            Donna,
            I wholeheartly agree with ChrisWBS, don't give up finding a surgeon. It may be that the docs you have seen were not qualified to fix your back, since it is pretty severe.

            Keep looking
            SandyC
            SandyC

            Comment


            • #7
              Donna,

              Your lack of supportive female relatives is heartbreaking ... what terrible, spirit-breaking statements to hear growing up. They are the biggest problem I saw in your entire story.

              I cannot even begin to fathom what would make a mother tell her child such degrading things, and can only imagine she, herself, must be a very unhappy, very insecure - or very disturbed - person. Your aunt's input is just as deplorable.

              Don't let them steal YOUR joy of life - and YOUR self confidence.

              I find "marriageable" such an odd term ... as if you're some commodity. You're SO much more. To push for someone (*anyone*) to marry you virtually ensures a union to someone who isn't a suitable fit. Happy alone (and you must be that to start *anyway*) is ALWAYS better than lonely with a partner.

              (... and yes, BTW, I am single. Until someone comes along who adds value, I'll stay that way.)

              Men or women, black or white ... it doesn't matter - someone "on the hunt" for a mate is obvious, and it's off-putting to most. Enjoy life vs. forcing yourself into a pair, and you're much more likely to find the right person for you.

              I'm not sure what made your mother and aunt hate men so much, but they're certainly given you a biased and unfair view of what ALL men are like. If I were you, I'd separate myself from their "support". Sounds like they're your worst enemies vs. the definition of "family" with which I'm familiar ...

              Has your psychiatrist never mentioned this ??

              Best regards,
              Pam
              Fusion is NOT the end of the world.
              AIDS Walk Houston 2008 5K @ 33 days post op!


              41, dx'd JIS & Boston braced @ 10
              Pre-op ±53°, Post-op < 20°
              Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


              VIEW MY X-RAYS
              EMAIL ME

              Comment


              • #8
                Dear Donna,

                Thank you for sharing such personal, vulnerable feelings and concerns with us. These are issues that need to be talked about and not left unsaid. I have so much to share with you regarding my lifetime of experiences and feelings. However, today, I do not have the time to do these issues justice. I will get back to you sometime next week and hope I can help shed some more light on these issues. You sound like you have a wonderful mind , keep your spirits up
                and be proud of the person that you are.
                Until later and best wishes.

                Comment


                • #9
                  surprisingly married

                  I never thought I would get married either. I have a greater than 90 degree curve in my lumbar spine with a compensatory 90 degree curve in my thoracic spine. I also have significant rotation and a prominent rib hump. I am estimated 5 inches shorter than I should be. I have been to countless surgeons- neuro and ortho, including some top specialists. None want to touch the mess that is my spine. I have hemivertebrae, mineralizing discs and some pretty bad degenerative joint disease. Because I am so "high functioning" (a doctor called me high functioning), surgery is not an option and is reserved as a salvage procedure. Some of us just have to give up the hope of having that sexy "small of your back". If so many doctors turn me away (and surgeons love a challenge) that is a sign.

                  On to the topic of marriage: I am a highly educated (DVM working on a PhD) white woman that has been married for 6 years. I lived with the torment of being "deformed" since birth- kids are cruel (that is for an entirely different thread). I say surpringly married in the title of the post because I am somewhat superficial and wonder if I would be able to look past my deformities if the roles were reversed. I did meet a guy (white- I don't know about race differences- I have no experience with that) that was able to look past my problems. He is wonderful- so don't lose hope!! He claims he didn't notice my deformity until our third date- I think he needed to get his eyes examined cuz the lower half of my body heads to the right while my torso tries desperately to head to the left!!!

                  While my husband is physically perfect, he comes with flaws. I think that is the lesson- some of our flaws are visible- some are not. Aren't they lucky to get to be with someone that displays her flaws, deals with them, and doesn't try to hide them. Think of what we bring to a marriage in determination and self worth and an understanding that perfect isn't all its cracked up to be. My back made me more determined to be self sufficient- I think I am driven because of it- and that makes me attractive.

                  Comment


                  • #10
                    Absolutely awesome post, Pathvet.

                    Best regards,
                    Pam
                    Fusion is NOT the end of the world.
                    AIDS Walk Houston 2008 5K @ 33 days post op!


                    41, dx'd JIS & Boston braced @ 10
                    Pre-op ±53°, Post-op < 20°
                    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                    VIEW MY X-RAYS
                    EMAIL ME

                    Comment


                    • #11
                      Thanks for sharing

                      Thanks again everyone for your encouragement and advice. I find it fortunate that a board like this exists. In my lifetime I have met almost no one with a noticeable scoliosis deformity. I very seldom see anyone in public as disfigured as I am. So it helpful and refreshing to get the perspective on issues such as I mentioned in my original post from those who are actually dealing with scoliosis. It’s been frustration receiving the opinions and advice from people who don’t have it, whether they are family or friends. I haven’t had the chance until now to communicate with scoliosis patients about how their lives have been affected by scoliosis, both physically and socially. (Of course I know that one’s experiences depend on the severity of the scoliosis and the kind of support one receives early in life). The way things stand now, I have temporarily put my search for a surgeon on hold and at my age, I am not looking for a romantic relationship or a husband. Life is quite nice as a single. I don’t resent men and enjoy good platonic relationships with them. The other will happen or it won’t; I won’t want base my self-esteem on whether I get a date or not. However I have always been a bit curious if other women with scoliosis have found their chances—for marriage and children—limited due to having a deformity.
                      To Pathvet: thanks for sharing your personal experiences. So it IS possible.
                      To Wishing: When you have the opportunity I would like to hear whatever you would like to share.
                      To all: Advice and support is reciprocal. Anybody on this board who wants to share questions and problems with me is welcome to post on the board or contact me personally.
                      Donna

                      Comment


                      • #12
                        Donna- I was just very impressed to read your most recent post-- it sounded so calm and accepting and positive. You have obviously had a rough time of it, so it was a relief to hear you are fairly content with your life. Scoliosis is a sort of lonely condition, isn't it.... In "real life" I only know one other adult (crippling) and one teen (mild) with scoliosis -- and that's it. The forum has provided so many understanding souls-- and they are so very dear. It's amazing what sharing can do-- it helps so much to have this kind of support. I'm so glad you are now part of the forum. Take care.
                        71 and plugging along... but having some problems
                        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                        Corrected to 15°
                        CMT (type 2) DX in 2014, progressing
                        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                        Comment


                        • #13
                          Donna, I have not had to deal with scoliosis, but I have had to deal with a number of medical problems to do with my heart and kidneys. I was almost nine before the first of several surgeries were done, and at that time I was about the size of an average 5 y/o. It had lasting effects on me that have affected my self esteem, and more importantly self confidence. To add to that, I had difficulties with my father who was a loving person but was psychologically abusive (my mother's words in a recent discussion, not mine). I too have never found a "significant other" and have not really tried because I am convinced that it would be as many of the friendships and associations that I've had, a one sided relationship depending too much on them for support. You really sound like an awesome person! If they can't like/love, and accept you the way you are, then they're not worth your time. I would look into the surgery not for the asthetics, but because of the severity of your curve and the effect it's having on your pulmonary function. If your curve was that bad as a "tween"/teen and they didn't get much correction, it sounds as if someone really messed up. If it has been slowly progressing, then it's all the more reason to look into it. If it's not stopped, it could progress to a point where you may need supplemental oxygen, or even ventilatory support. I hope that you are finding things to do with your time in retirement that can have meaning to you, and who knows, maybe through some of that stuff you may find someone. I'm guessing that as a music teacher for 35 years, you enjoyed what you were doing. Perhaps you could volunteer some time working with kids.

                          Although it's for different reasons, you and I both share some similar problems. I've spent some of my time doing sound work and recording, and am now finally getting to a point where I can appreciate people's compliments rather than thinking that they are "just being nice". That's gone quite a way in terms of helping my self esteem. In fact, I'm doing a job tomorrow for a group that I met last year at an event that I was doing sound for. I was a little taken aback when I got an e-mail asking me if I would do it, but now I'm excited about it. Hang tough and remember that people need to accept you just the way you are. If people are turned off by your appearance, maybe you can use that wonderful intelligence and personality to turn them on. Good luck.

                          Comment


                          • #14
                            scoli125,

                            While 125 degrees is very severe, your case is not unprecedented and you may be able to find help for the scoliosis and for your breathing impairment. The Schroth method of physiotherapy uses a breathing technique that usually increases vital capacity.

                            Assuming that you are in Illinois, there are two Schroth clinics not far away:

                            http://sdwpt.com/

                            http://www.scoliosisrehab.com/

                            Comment


                            • #15
                              Thanks &quot;Writer

                              Writer, thanks for your suggestions. I do have a pulmonoligist, but I will take your advice seriously and will look into it
                              Donna
                              Last edited by scoli125; 03-23-2008, 04:45 PM. Reason: Did not address the person I was responding to

                              Comment

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