Chiari Online Support Group

Information for Spouse and family

Does anyone have a website or anything that i could show my wife about Chiari, like explaining that my moods, headaches, and all the other symptoms that come with this isnt my fault. I dont think she understands how serious this is. She just gets angry with me because she doesnt understand the effects this has on me mentally and physically, which isnt her fault. I guess its human nature. Shes threatened leaving me recently and ive tried to explain to her that its getting worse and its not my fault that i act irrationally sometimes and that i feel like im literally going crazy. Please anything that could help explain the symtoms of this would help. I just recently found out that i have this and still learning about it.

Hi Vette - Saw your request for information, I wanted to reach out to you. I hope you can help your wife understand what you’re going through, the symptoms involved. My daughter has suffered from birth and she has spanned quite a range of debilitating symptoms.
Here are some websites that might help you both gain some understanding of this. I wish you both the very best and I hope you can find some help, I know it can be scary and frustrating. Hang in there - Jennifer

https://rarediseases.org/rare-diseases/chiari-malformations/

https://consultqd.clevelandclinic.org/the-squeeze-of-chiari-malformation/

I am sorry. She is not understanding. Have her read everyone’s stories on here. If she like I will message with her to explain. This condition is not easy to deal with.

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Hi Vette!
When my symptoms first presented themselves and I was diagnosed with Chiari (10-11 months ago now), my husband had difficulty understanding how I was feeling, how I was suffering, difficulty understanding my symptoms, and how this all is happening and progressively worsening. This is one of the many reasons we’ve now legally separated. However, there are two websites my mother has used, and that I have shown my husband and a few close friends, I will share the links on here.

Also, have your wife read the stories on here, read what we talk about with each other. Hearing our stories and what we all go through with Chiari, it will give her a personal perspective and it will help her understand better, and to have the clinical and academic information alongside it, it should help her a lot.

Also, if you want, I can share my journey with Chiari as well if you would like it to help explain it to your wife, I know others here have offered that as well. I’ve learned that my close friends understand the best, my mother is getting better with understanding and working with my Chiari, there are days where she says comments that are offensive and harsh and we argue, but no where as often as we did when I first moved back with her two months ago.

Here are the links:

https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet

https://www.northwell.edu/neurosciences/our-centers/chiari-institute

Hope this helps! Always here if you need someone to talk to!
-Traci