Hello Everyone. Is it me…or for some reason do families and friends just not understand the Chiari 1 Malformation, the symptoms, and how it affects daily life and daily activities? God forgive me I won’t judge my own friends and family, but none of them are truly supportive, I feel more angry and stressed staying with family, since staying with them means I’m in an area with better neurosurgeons. I’m used to lying about how I feel, about my pain levels, I make myself smile, make myself look like I’m okay and feel okay. The times I’ve been in public where I’m visibly not walking right, exhausted, in chronic pain, experiencing the dozens of symptoms I have, people either look at me with pity (which I don’t want), or look at me like I’m a freak. I have only bad days, I do not get any good days anymore. I’ve had 8 months of difficulty with these symptoms. Even with test results showing I have the malformation and my cerebellar tonsils have moved… people think I’m still working… that I can travel… that I can have intimacy in relationships… that I can do whatever I want, that I’ll be fine, it’s all just headaches or all made up, when in reality it is. There are no support groups in my area that I can even find.
I’m tired, exhausted, angry, upset, and feeling very alone, and I’m tired of feeling alone. How do you find a support group for this, and a support network for if/when you need surgery? Considering once you have the surgery, many have told me we need someone to help us do literally everything while we are healing both in the hospital and outside of the hospital. Family cannot take time off from work, they financially cannot afford to support me or hire a nurse to care for me during the hours they are at work… and many military spouses will say tri care prime is great, while it covers medical bills, it doesn’t cover long-term care or care of any kind after a major surgery.
Not sure who else to ask for help… lol (trying to laugh and be my joking self).