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Do you ever get that gut feeling like your family is turning away from you? Like you're somehow expected to do things that you're unaware of?
My family members have recently been turning tail when it comes to my situation. I've done everything I could to prevent this but it's finally happening anyway. I try not to discuss my conditions or symptoms with family or friends because I don't want to seem like I'm complaining. At the same time, I might be bringing this onto myself by keeping them 'out of the loop'.
Both my parents died when I was 13 so I can't just pick up the phone and call mom. I can usually count on my grandmother to be happy to hear from me but that's not even the case anymore. She's been busy getting treated for breast cancer and almost every family member has been taking her to her appointments. I wish I could do the same but I have to have help from my husband to get to my own appointments. I physically cannot leave home without help - much like her.
Now I'm being treated as if I should be able to do more, like everyone else, to help her.
I have a very close local family yet I haven't seen most of them in about a year and they get together weekly for dinner. I'm perfectly content with sitting at home with my daughter and my sewing, but my family has always been my only friends.
I try to call everyone occasionally but now they won't return my calls. I haven't spoken to many of them in months. Is this in my head? Have any of you had similar experiences?


  • dilaurodilauro ConnecticutPosts: 9,832
    Alienation - this can be the world for some many people dealing with chronic pain.
    My best advice, is that you have to focus in on yourself, thats not being needy or selfish, until you completely know whats going on with your physically and there is a plan in place to address it, there is not a heck a lot more you can take on.
    And if you do take it on, two things will happen (1) Additional Stress and thay plays havoc with our spines or (2) Guilt because you are not helping out....

    Thats why I said, for atleast while, put yourself first.... everything else will slowly fall into place.
    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
  • My family do not get it at all. I don't look any different - I used to be the life of the party now I'm not the bubbly laughing person i once was, they don't want to know. With spine pain comes isolation and disappointment. I am disappointed my family do not understand but how can they.

    They think I should go and visit more but don't realise i am home crying for 3 hours if I drive to see them. I try and hide the pain. They really have no clue. No-one can get this unless you've had it. It is isolating and friends leave you as well - my friends absolutely do not get it. As Ron said - it was a great disappointment to me but you have to look after your self first 'cause no-one else will.
  • My husband and I have discussed moving to central Florida to be near his family. We try to visit them often but the 6 hour drive is, well, painful. I have the most supportive and wonderful in-laws. I know I got lucky. There's also the close proximity to the Mayo clinic in Gainesville. I've heard wonderful success stories from patients. My father in-law suffers from post-polio so we like to keep each other company when the family goes out and we're not capable of joining them. I hate to leave my family here in Georgia but I really think the stress is contributing to the pain. If we lived 6 hours away, I'd understand why they would never visit. It's not something I want to worry about but I can't help it. I feel like I'd lose a little but gain a lot. Of course my family wouldn't support this idea though so it makes me second guess myself.
  • AllMetalAAllMetal Posts: 1,189
    edited 01/26/2014 - 12:07 PM
    We moved from Macon to south of Jacksonville... We love it here. I didn't use mayo, but I have friends with cancer that love the mayo clinic. You are about 4 hours from Macon to Mayo, so still worth the trip if you are considering getting more opinions. And if you like what mayo says, then living in Gainsville would be convenient as its about an hour and a half from mayo. Have you been to Emory? What do they say?

    As far as alienation, are you religious at all? Macon has many wonderful churches with tons of out reach programs for you to be a part of either giving or receiving.

    Best of luck to you. Hopefully you'll find a loving niche soon.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • I can certainly understand the alienation. I am two weeks post op in Northern Ohio. This winter has been one snowstorm after another and it keeps people from being helpful. They all stay inside! So, when I do get an offer to help, I take full advantage of it. I know friends get tired of hearing about pain and such, but I have to talk about my fears and uncertainties. It is a very difficult time. You're not alone in that.
  • ...I'm not the only one feeling this. Metal, I live in Macon now. Lol. Horrid place. Small world. I haven't been to Emory. I can't drive that far and help is sparse. Zinnia, I'm not snowed in here but I do live about 40 minutes from any family. Most of them won't make the drive. I have an uncle close by but he drives a truck and is gone all but 2 days out of the month. It does start to feel like a deserted island. Or the twilight zone.
    My only trips 'into town' are for doctors appointments, which my husband drives me to. I do have a wonderful congregation at my church and someone always checks in on me since I can't come in, I just call every Sunday and listen to the service on the phone.
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