View Full Version : Wondering where my social support is

10-29-2007, 05:33 PM
Hi all,
I'm a few months out from my second surgery. It's like this constant thing on my mind, but people don't see how much it affects me. I think that people don't see how much of an issue it is because I look really good most of the time, put on my make up and look 'normal'. The truth is, that I think about it all the time, am really stressed, and wonder where my friends are when I need them.
I talk to people about it, not too much because I don't want them to get the broken record treatment, but then I don't hear from them if I fall off the face of the earth for a week or so. No-one asks how I am going spontaneously, and people don't ring me for a chat.
I try and be proactive and get together with people, but I hate it all being one sided. I wonder if when I finally have the surgery, if then people will magically appear and be supportive. But right now, I am worried about being alone for the whole thing. I put a post on my facebook page saying that I am stressed, need support beforehand, and am worried about being lonely. I don't know if they just don't know how to be supportive, or if they just don't care enough to invite me out for coffee.
I mentioned to my university friends that I was applying for impaired performance for my upcoming exam, and the first thing they said was 'why?'. But they didn't follow that up with, gosh, you must be having a hard time. And these are doctoral level psychology students, you would think that empathy would be the basic skill they have.
I feel pathetic writing this post, but did anyone else feel like this pre op? That they had a big thing going on in their lives but no-one could see how big it was until after the operation and you have a physical scar.

10-29-2007, 06:26 PM
NZ, I completely understand. My surgery is 3 days before yours, so we're pretty much in the same boat (It's 5 weeks from today for me...). I think that sometimes people who are lucky enough to be "healthy" just don't know how to respond to those of us who are not. I also have arthritis, and have always had to guard myself against venting too much to my friends, because I don't want to push people away, and I think that when people don't know how to respond, they can back away. Medical things like this are scary, not only to us but to the people around us. And for them, they have the option of ignoring the problem, a luxury you and I do not have (though I'm sure if I could walk away from this medical stuff, I would too!). In the end, I've learned to appreciate the people who DO know how to be supportive, and to take better care of myself rather than relying on others to do it for me. I'm not sure if this is helpful, but if nothing else, you're not alone.

Karen Ocker
10-29-2007, 08:00 PM
They really cannot possibly understand because either they never lived through it themselves or have not watched a family member deal with it. So going to them for support is like going to an empty well for water-they don't have it. :p

I personally got the most help from the 2 scoliosis forums I participated in at the time. I have a very understanding husband and my family saw me go throught the original procedure in 1956(!).

10-30-2007, 02:34 AM
Hi NZ girl,

Aussie mum here! My 12 and half year old daughter is having surgery next year for Scoliosis not me but......

I certainly felt for you when I read your post. I've suffered for the last 6 years from an anxiety disorder where it got to the point that I had to seek professional help. I could not function, not think, it got so bad where I would actually collapse and be unable to function for days. I don't actually "suffer" in the sense from it anymore but rather think of myself in remission. It can come back and sometimes try's to rear it's ugly head.

The reason I am telling you this is because sometimes people have so much on their own plates that to take on someone else's problems is just too daunting for them. I found that I was of no use to support anyone else during my worse episodes. So sometimes even the best of friends can be well meaning and would love to support you but just can't take on any more than what they are coping with at the moment.

On saying that - sometimes people are just plain asse's and so wrapped up in their own lives that they don't deserve our friendship.

To tell the difference between the two is hard, I always live by the motto forgive and forget but sometimes it comes down to a very hard decision whether to keep a friendship or ditch it. I just ditched my beloved best friend of 16 years because she just hurt me too many times - long story but I couldn't take her pain and hurt any longer. I'm still crying over that break up but funny how I'm kind of enjoying "thinking" for myself for a change without her comments clouding my judgement on some things. I sometimes too feel lonely and miss the long chats and the fun we had together but when I'm ready I'll go out and meet myself a new "buddy"!

You will get through the operation without them. Do you have husband or family - sorry didn't get a chance to look for other posts from you to back track. You will get LOTS and LOTS of support and cyber love from this forum. The people on here really care. I don't post often but I do follow and read peoples stories - it's amazing the advice and friendship that people can put out. I wish we could all yell "beam me up Scotty" and have one big get together, it would be amazing.

Feel free to email me anytime you like. Best of luck with everything and try to put on a happy face.


10-30-2007, 02:54 AM
You guys are right about sometimes people have stuff going on and just don't have room to take on someone elses 'stuff'. Since I put that last post up, I had a friend genuinely ask me how I am, which was really nice. I am really worried about being lonely, but I also need to be grateful for the things that people do for me. Count my blessings as it were. I have a lot of people doing really nice things for me within my family, I think I'm just feeling left out by my friends.
I think that when I have the surgery that I will be well looked after, I think it's just they don't really get how I'm feeling in the run up.
Thank you all for your support, I really appreciate it. It's nice just being able to be frank about how I'm feeling!
And vndy, have been thinking about you a bit because your surgery is so close to mine, and I've seen you on the forum a bit going through similar things.

10-30-2007, 07:20 AM
Dear nzgrl,

What a great thread!! I'm almost 2 years post op and have felt so much of what you're experiencing. I had about 6 months of excruciating pain and was on Vicodin 4x/ day. I moved my surgery up 6 months because my best friend said I was draining her. I only spoke to her once a week at that time and was still helping her out when I could. It is only looking back that I realize how much pain I was in- I really shouldn't have been driving on all the pain meds. I also put a smile on my face and tried not to make it too big a deal. Well, it is a big deal!!! I was still working, singing in the choir and directed the children's choir in two performances. I must have been a nut! After the surgery, I was pretty unconscious for the first month because it took a while to figure out my pain meds and the correct dosage. My church choir made dinners for me, my husband took 3 weeks off and my mother in law came to stay for a few weeks. I did ask for them to help me. The hardest part was after that first month. My husband had to travel, my kids were away at college and my mother in law died in her sleep, so we had a funeral to plan. I was hospitalized 2x after my surgery for complications. Then, somehow, I felt I was ready to go back to work at 3 months post op. Well, that sure didn't work! I was exhausted. I called Meals on Wheels because I was too tired to cook and was told you had to be 60 to qualify. I am now 51. I didn't want to ask my church for any more help because they had already cooked for me. I was depressed, in pain, lonely and bored. The best friend I spoke of previously, distanced herself more and more from me, and when I finally asked her why, she said everything was all about me and her needs had been forgotten in the relationship. She ended the 12 year relationship, saying she didn't want to listen to my "shit". I am still devastated. I am not a needy person, nor do I complain. Surprisingly, people I didn't expect to step up did and those I thought would, didn't. I'll never forget the people who brought me books to read and DVD's to watch. It really doesn't take much to make someone feel cared about. Although, as a nurse, it comes naturally to want to help people, I now know even more ways to do that. I found this forum late in my recovery or else it would have played a big part in answering my questions and sharing what only those of us with scoliosis can know. Please feel free to vent any time, it is good to get these feelings out and know you are not alone.


10-30-2007, 10:46 AM
Interesting! I have also been surprised at how thoughtful some people have been and a bit disappointed that other people have disappeared. I don't hold it against them, though, because over the years I've learned that everyone is doing the best they can in life. Lots of people are frightened by or can't handle seeing their friend or loved one disabled or in pain or in need of help.

I think it's up to us to ask for the specific help we need from those who are able and willing to give it....even if we have to pay for it!!

10-30-2007, 01:27 PM
I think Singer nailed it, we shouldn't really expect anything from anyone. Yes it is a hard time we are going through leading up to and post op, and people try to do the best they can and we should try to appreciate that.

You are doing what most of us have done by trying to put on the happy, I'm ok face. The only people who know what you are going through leading up to the surgery is those of us who have been in the same boat. Nobody else will have your surgery date on their mind 24/7.

Please believe me that the surgery wasn't any where close to as bad as I had made it in my mind. I nearly drove myself crazy ahead of time with all the "what ifs". Then about a month before the surgery I really tried to do a lot of self talk and tell myself that I wanted to go into this thing calm and relaxed so that I could have the best chance of a successful surgery. It worked.

Maybe try to find one person who is the best listener and talk to them, tell them how you are feeling, rather than expecting people to guess at what is going on behind the "I'm ok smile".

It is a difficult time but it is so worth it. I am only 5 weeks post op and am really glad I had this done. I know it will still be a long road ahead but well worth the trip.

Stay positive!

10-30-2007, 07:06 PM
This is a great thread because we've all been there or still feel what you've said. It is easy to get really disappointed in people when they don't come through for you, especially in your times of greatest need. As hard as it is, it makes us stronger people and we know how to act when our own friends need us. It doesn't seem fair when we don't get the support, but hopefully we can help others by our own experience.
I was upset by friends and family who didn't show enough support pre-op, during the surgery, or even now. You do learn your true friends and what people are or are not capable of. However, as has been said, this is one of those surgeries that people just can't understand unless you've been there. This is another reason this forum is so wonderful. We do understand here, we share the frustration, tears, anger, and joy at successful recoveries and our abilities to overcome.


10-30-2007, 10:09 PM
You know, I kept telling my family that they had no idea what things were going to be like after i had surgery. i would try and read some of the threads from this forum and they would suddenly remember they had to be somewhere else. Most people don't want to hear about it, some because they want to deny how dangerous it can be, and some because they don't want you to bother them with it. But, people do surprise you. My strongest ally, outside of my husband, was a lady that's almost 80 and not well herself. By golly, she wasn't scared off from me! Nzgirl, i am glad you started this thread, it sure did put things in perspective for me because i see that many of us feel a bit abandoned at times! I hope things turn around for you....

10-31-2007, 02:02 AM
Hi. I just wanted to add that as a doctoral candidate, my experience has been that grad students are among the most socially awkward people there are. Everyone is into their own work--work that is often solitary. And since we see each other so sporadically, out of sight, out of mind also inhibits the support they offer.

Again, it has been my experience though, that people generally come through for you if you are clear about your needs. They mean well, they just don't know what to do, so while it can be tiresome to always be the one initiating outings or whatnot, it should not make you feel as if others don't care. They just don't get it or don't know what to do. But if you tell them explicitly that you are anxious about your impending surgery and need to talk, they'll be there.

Good luck. Posterior should be less traumatic than anterior, right? At least you have that going for you.


10-31-2007, 03:40 AM
Thanks all, I'm really grateful. I am learning about peoples strengths and weaknesses, just as I learn about mine! It really does boil down to the same theme, that some people often are just so wrapped up in themselves for whatever reason that they can't see what is going on for others. Like, I can't see what is going on for them and why they arn't helping me... cos I'm going through my own issues. I have had some really good things happen in the couple of days since I wrote this, and I am working on refocusing onto the positive stuff. I think I should be grateful that I am going to find out who my real friends are and won't waste time on those who aren't.
I'm going away on holiday for two weeks starting this weekend, it should be a good chance to relax. In between now and then I have an exam, so it should keep me occupied!
I'm hoping posterior isn't as bad either... I think my first one was traumatic because they gave me less pain relief than I was taking a year ago when I had some mild back pain. I'll be speaking up this time (and making them listen!)

10-31-2007, 12:42 PM
NZ - thanks for starting this thread. I think I needed to read it for my own reasons, as well. I try to go by the assumption that people are doing the best they can with what they have, and I do hope that's true.

Shegiles- I agree, being a graduate student is isolating!

All of you have reminded me to focus on the positive; my boyfriend, my family (who shows support however they know how), my academic advisor who won't stop stressing that my health comes first and not to worry about academic deadlines, and my closest friends.

Here's to being grateful. Happy halloween :)

11-01-2007, 03:06 PM
In the vane of appreciating the support we get, I thought I'd share...

I received an email from my yoga teacher yesterday inviting me to a stress and pain reducing yoga class, free of charge, and saying she was thinking of me. I really appreciated the unexpected gesture.

It's so easy to see what we're missing rather than what we have, and I'm really making an effort to focus on the positive! Thinking of all of you :)

11-02-2007, 01:46 AM
I may be way off base here, but i feel the need to add my experience.

I was one stubborn women, that didn't want to show any weakness or fear concerning my upcoming frightening surgery to my friends, co-workers, and even my family. What a huge mistake that was!!!

I can honestly say in retrospect that I wish I would have expressed all my fears and concerns to each and every one of them!!! I now feel like I went through the most emotionally difficult part of the pre-surgery alone, because I didn't let anyone in on my inner most feelings. I hope others don't make the same mistake I did!!!

I tried to spare the people that cared about me the most, when I should have allowed them to help me through it. I know we all deal with difficult times in our lives in different ways, but I feel I made a mistake, because those that care about us the most, really want to be included in our hardships just as much as our triumphs!!! That's what makes them cherished people in our lives!!!

Just my opinion,

11-02-2007, 10:12 AM
Shari, you did not make any mistake, so please donít berate yourself so much. Speaking from experience, I find sharing feelings about personal health issues with co-workers is unwise. Too often private revelations are circulated through the gossip mill and can snowball into stories that are untrue. Additionally, if you look healthy, you may be perceived as a whiner. If you have supportive family, youíre very lucky. But sometimes, even family members donít want to hear your tales of woe. I have a twin brother who remains mute every time I broach the subject of surgery; and I donít know if itís because he really feels for me and just doesnít know what to say or if heís sick and tired of hearing about my scoliosis. I have a life-long friend who lives in Florida who I know I can call at any hour of the day, and sheís always there to listen to me. She has been wonderfully supportive and has been a blessing to me. But I honestly feel that your best source for expressing your fears and anxieties are the very people who are going through the same thing. Getting involved in a support group prior to surgery is invaluable. Iíve already met some wonderful people through the Chicago support group who have gone through surgery and know what I am facing. One woman even offered to come to my house to make sure itís post-surgery ready for me. These are the people who can best relate to what you are experiencing.