Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Hello all, I have noticed that there are FAR more many women on this forum than there are men (I apologize to the men on here for saying this). I'm just wondering if it's because there are more women with ACM or if it's because we just like to talk more about our experience with this disorder. Also, I've noticed that my parents, siblings, in-laws, etc. are not in support of my surgery (unfortunately). I'm thinking that they just cannot fathom that this could be happening to me, either that or they just want me to live with it and suffer continously without the risks of neurosurgery. Even my own mother, after reading Dr. Oro's site, said " You know, it looks like you're going to be bed-ridden for quite some time following the surgery, so you better not plan to go back to work for a LONG time. " Way to feel encouraged!! This coming from a woman who only looked at this one website and listened here and there about my explanation of ACM. Now she's giving ME advice. UGH! Here I've been researching this disorder day in and day out every since I was diagnosed. (Granted, I love my mother, but I just can't believe the things she says sometimes). The only two people who plan to be present at the hospital for my surgery are my husband and my best friend from Colorado. Granted, I don't want my whole family flocking out here for it, but I haven' t even heard anyone mention that they MIGHT come visit me afterwards to see how I'm doing. I'm just wondering if any of you have had great support for your surgery. If you actually had family who was legitimately concerned and supportive and did not think you were a hypochondriac! I, on the other hand, took 3 long years to figure out what was wrong, and therefore implanted in my loved one's heads that I was making it all up for some sickening secondary gain. Yeah right! Like I'd go from being a high-achieving, lover of life type of person to THIS. And despite the ACM, I'm STILL busting my butt each day trying to get my master's degree and working. What kind of person do they think I am? My family is very highly educated and highly skeptical of ANYTHING doctors say. PLUS, they are used to dealing with mental illness in my family, no physical illness. So everything I've been saying they think is anxiety/depression/bi-polar/addiction (none of which I have, with the exception of occasionaly anxiety). I guess I would like to have a proper gauge as to how families should really be reacting to this. So, any support stories re: how your family handled the ACM surgery would be great. Then maybe I can teach my family a thing or two about compassion. I apologize for the griping. I just get so frustrated and feel so alone in all this sometimes! *just got off the phone with my mom...can't you tell?* Elena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 My mom is great (but we think she may have it too, so maybe she just understands) my husband said I'm just a martyr and left two years ago... Much love, Traci, ACM1, no surgery, hypothyroidism mom of Andre (15 yrs.), ACM1, cyst on brainstem, scoliosis and Zoe (9 yrs), Thalassemia and Familial Mediterranean Fever From: Ethd26@... To: chiari Subject: Females and Family Date: Sat, 1 Dec 2001 21:48:05 EST Hello all, I have noticed that there are FAR more many women on this forum than there are men (I apologize to the men on here for saying this). I'm just wondering if it's because there are more women with ACM or if it's because we just like to talk more about our experience with this disorder. Also, I've noticed that my parents, siblings, in-laws, etc. are not in support of my surgery (unfortunately). I'm thinking that they just cannot fathom that this could be happening to me, either that or they just want me to live with it and suffer continously without the risks of neurosurgery. Even my own mother, after reading Dr. Oro's site, said " You know, it looks like you're going to be bed-ridden for quite some time following the surgery, so you better not plan to go back to work for a LONG time. " Way to feel encouraged!! This coming from a woman who only looked at this one website and listened here and there about my explanation of ACM. Now she's giving ME advice. UGH! Here I've been researching this disorder day in and day out every since I was diagnosed. (Granted, I love my mother, but I just can't believe the things she says sometimes). The only two people who plan to be present at the hospital for my surgery are my husband and my best friend from Colorado. Granted, I don't want my whole family flocking out here for it, but I haven' t even heard anyone mention that they MIGHT come visit me afterwards to see how I'm doing. I'm just wondering if any of you have had great support for your surgery. If you actually had family who was legitimately concerned and supportive and did not think you were a hypochondriac! I, on the other hand, took 3 long years to figure out what was wrong, and therefore implanted in my loved one's heads that I was making it all up for some sickening secondary gain. Yeah right! Like I'd go from being a high-achieving, lover of life type of person to THIS. And despite the ACM, I'm STILL busting my butt each day trying to get my master's degree and working. What kind of person do they think I am? My family is very highly educated and highly skeptical of ANYTHING doctors say. PLUS, they are used to dealing with mental illness in my family, no physical illness. So everything I've been saying they think is anxiety/depression/bi-polar/addiction (none of which I have, with the exception of occasionaly anxiety). I guess I would like to have a proper gauge as to how families should really be reacting to this. So, any support stories re: how your family handled the ACM surgery would be great. Then maybe I can teach my family a thing or two about compassion. I apologize for the griping. I just get so frustrated and feel so alone in all this sometimes! *just got off the phone with my mom...can't you tell?* Elena Quote Link to comment Share on other sites More sharing options...
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