Chiari Online Support Group

Tired of Coping Alone, Tired of Chronic Pain


#1

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).


#2

Hey Traci,
To say I understand is a bit of an understatement. “It’s just a headache…” is a common line. Prior to my own surgeries I thought I knew what a headache was too. But post surgery, ohh hell, this ain’t ‘just a headache’ this is a mind numbing overload of massive proportions. Trying to get others to even come close to comprehending the pain is impossible. Like many ‘invisible conditions’ others have no gauge on which to measure our torment. I often think it would be easier if I’d lost a limb, something others could see. I too have learnt to lie, it’s just easier to fake a smile than explain. I have followed all the medical advice I’ve been given and attended pain management clinics but, for me, all the theory in the world doesn’t make this journey any easier.
There are support groups around that can be of assistance. Here’s a couple of links that may assist in networking with such groups


http://www.nypainsociety.org/
They may also know what sorts of support services may be available within your area. Networking with such groups is a good place to start as they all have their own networks of supports.
I do hope this helps.

Merl from the Moderator Support Team


#3

Hi Merl!

Thank you for the support group information and providing the links! I will definitely get into looking at them once I’m back from my coffee run (can’t resist getting coffee only freedom from being inside all day) lol. I have followed the medical advice as well! Most pain medicines either don’t work or I end up allergic :frowning: only opioids and stronger medicines like morphine and fentynol seem to work and even doctors don’t want those used long term for fear of health consequences and all that. I hate having to lie, but you are right it’s easisr to fake a real smile and say “I’m fine” when in reality my head feels like it’s splitting or wanting to burst out of my skull most days.

Providing the information about those support groups definitely helps ! :slight_smile: