I am very blessed to have wonderful parents and an amazing husband. But, what I can’t seem to understand is why I’ve lost so many friends through this whole Chiari illness. They’ve stopped calling and visiting. They all seem to have a “get over it” or “enough with all that” issue. It is so frustrating, because I would never do this to any of them. Other than my parents and my husband, no one seems to really care anymore. I think that’s part of the depression I’m going through right now. Because of this illness, I’ve lost my job, and now it seems I’ve lost my friends. Any advise?
I blame myself for a lot of it. I expect others to do for me what I would do for them, and let’s face it, that’s simply not going to happen. But SO much has happened this year (i got sick; i lost my job; doctors couldn’t figure out what was wrong with me) and I truly believe they’re just sick of hearing about it. But like you said, you find out who your true friends are. Even though I have wonderful parents and an amazing husband and daughter, I still feel alone and depressed. I’m on an antidepressant/anti-anxiety pill, but they aren’t helping. It’s all just too much: being in pain; losing my job; having to sit at home all day alone. I literally cry everyday. Please don’t misunderstand, I would never harm myself. I’m just venting. And to be totally honest, I’m just feeling sorry for myself.
Thank you for listening. I feel better just being able to get that off my chest.
I feel as though I’ve already made three new friends in just one morning! Thank you Abby, Emmaline, and Beeba. Your kindness means so much to me, and I know I will find great strength from all of you!
A quadriplegic friend of mine once said "If they aren't going to be around in your times of need, then you don't need 'em."
I've had friends mock me when I was on my cane, roll their eyes when I've bitched about the nerve pain, and one just short of attacked me for being on disability. I don't think they can wrap their brains around the idea of being in actual pain without an external/visible injury. Perhaps they think nerve damage is just for war veterans and other victims of severe trauma? They don't get it. I kind of doubt many people can without experiencing it for themselves. It can all be so different from day to day.
I've had the standard decompression and laminectomy all the way down to t3 to drain the biggest of 3 syrinx..es?(...ies?...what is the plural of that? Anyway...) I've got the scars to prove what I've been through and still get doubted and harassed. What is that? Does ignorance of medical science equal loss of sympathy to the uninformed?
Wow, Dylan! You hit the nail right on the head. People will ask my husband how I am doing (in my opinion, just to be polite), but when he shows them pictures of my shaved head with a 12 inch scar running down my head to my back…then comes the OMG. “OMG, I didn’t realize it was so serious.” “OMG, if I knew it was that serious I would have called her.” “OMG, she must have been so scared before that surgery.” Prior to my surgery, I can’t even begin to tell you how many people asked me if my walker was “really necessary.” But my very favorite was “maybe you’re just on too much medicine.” I am so happy to have found this support group, because you have all been there. And you all share my frustration.
I totally understand what you are going through. I make a huge effort to try not to discuss being ill...in addition to chiari I suffer from chronic mono and celiac disease, but sometimes I can't help but mention it. I can tell people are sick of hearing about it. Plus they get frustrated when I don't feel up to doing things. For instance I have lost one friend because I never talk to her on the phone. I explained to her that I don't like talking on the phone because I have ringing/whooshing noises in my ears and it makes it hard to concentrate. Plus because my shoulder and neck hurt even holding the phone up is uncomfortable. Plus she seems to always call when I'm napping or eating dinner. I told her I would love to text her whenever and see each other in person I am just not a talk on the phone person. Apparently that was a deal breaker. Despite numerous efforts to apologize she refuses to speak to me. I'm sorry to have lost her as a friend but working full time and being ill is more than enough for me to deal with. :(
Beeba...my best friend has spina bifida and is in a wheelchair so we talk health a lot. I feel bad venting to her because she has it so much harder than myself but she is always there and is always checking on me! I guess we can only be understood by others with chronic illness!