Jobs? SSI? What do I do?

NEW UPDATE: I have received coverage. I should be able to go through with my operation though my insurance will have to pre approve first.

UPDATE: I just received a letter yesterday informing me that my health insurance ended on August 31st.

So I’m in a bit of a jam, here. I’ve turned 26 recently and will no longer be covered by my mom’s employer insurance a̶f̶t̶e̶r̶ ̶t̶h̶e̶ ̶e̶n̶d̶ ̶o̶f̶ ̶t̶h̶i̶s̶ ̶y̶e̶a̶r̶. I don’t have a job. In fact, I’ve never had one. I’ve always wanted a job because I would like something to do with my time and I don’t want to be a burden on my parents. The problem is, my health has always gotten in the way of this. Before my chiari started progressing in 2016, it was my severe anxiety and depression and lower back pain keeping me from looking for work. I can’t stand for long periods of time and I can’t do much heavy lifting. With my chiari now causing many more symptoms (feeling lightheaded/dizzy, numbness in face and limbs, headaches, fatigue, etc.), my NS has recommended surgery. I know I’m going to need followups that will probably be needed well past the end of this year. I don’t know if I should apply for medicaid/SSI or just try to find a job that I can actually do. I’ve been worrying about this moment for years now and I feel as though I’m at my wit’s end. What do I do? Help!!:confounded:

I suggest doing both. Better to come at the issue from all angles than to limit yourself. You never know what you’ll find!

Good luck!

Personally i have been on SSI since i was a little kid. It sucks bc i cant work with all the health problems i have. I even went to college to become an ultrasound tec. (To be able to help those who helped me) But i couldnt make it thro my classes bc of my chiari. It sucks that i cant help provide for my familey but if i wasnt on ssi i wouldnt be here. My meds would cost out the butt.
With that being said. They do help you keep ssi and help find a job that will suit your needs. Ssi is not lot when u pay rent food meds…ect
I wish you the best!

Hi Geo. I had my surgery back in 2006 in Milwaukee, Wisconsin (I live in Arizona) I went back for a 6 week follow up and have never returned. Although my symptoms have not completely resolved, I receive no treatment for my condition. I have not seen a neurologist since and don’t discuss it much with my other doctors because they just dont get it. My PCP at the time almost didn’t order pre-op testing because he thought I was grasping at straws. I was severely debilitated for 3 years before surgery. I had an MRI that showed no herniation but always believed I had Chiari because my symptoms were textbook perfect. I finally found Dr Heffez online and was diagnosed at last. I still suffer from chronic fatigue and pain with occasional dizziness. I was bedbound before, so I’ll take it. I can only work part time so I don’t get insurance through work and make too much money for Medicaid. I am frightened of the future mainly because my family offers no support and have made it clear that I will be homeless if I can’t support myself. They treat me as if I have chosen this and believe all I need is tough love. I’ve never asked for anything from them my whole life and have been quite self sufficient. I’m sorry. Just needed to vent my feelings. I’m all alone and am starting to panic about what I’m going to do as I get older. Geo, I wish you all the best with your surgery and hope you get enough relief to get a job with insurance benefits. Be thankful that you have a support system.

Rhollyn, I’m sorry that this is happening. I hope someday that the people in this world learn to be more empathetic. Hopefully, someday, no one will have to worry about whether they’ll be able to get the healthcare they need. I feel more worried about that than getting a job if I’m being honest. I really hope that you find a support system. You deserve that much. This forum is always here when you need it💕

UPDATE: I just received a letter yesterday informing me that my health insurance ended on August 31st.

So I’m not covered at all anymore. Looks like I’m canceling my procedure…

I would enroll asap in Medicaid. Call Social Security to enroll in SSI. Tell them it is an emergency situation and they may waive the 24 month waiting period. Once you have SSI you will be entitled to Medicare A and B. There is a charge for Medicare Part B of approx. $ 134. This will be paid for by Medicaid. Once you have Medicare A & B you may enroll into a Medicare Advantage Plan at 0 Premium that will cover your medical and Prescription Drug expenses.

You have SSI and SSDI confused there, PeterK but yes she should apply immediately.


Thank you for clearing this up. Did she never worked? Just wondering!

Not sure. You do have to have worked to get SSDI. Chiari in an of itself is not enough for SSI so that will require in most states a work up by voc rehab to establish the inability to work. medical records won’t do it unless its a lisited condition.

Lots of folks assume “disability” is a given. Its not. When you have earned $5,280, in a year you’ve earned your four credits for the year. The number of work credits you need to qualify for disability benefits depends on your age when you become disabled. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled.

Age 26 is a tough one. Before age 24 - You may qualify if you have 6 credits earned in the 3-year period (if you enrolled in school). The number of credits goes up dramatically from age 24 and up.

Really the OPs best option is to get established with Voc Rehab sooner than later.


Dear Geo, When I first started to apply for Social Security Disability in 2004, the only thing I was diagnosed with at the time was “Chronic Fatigue Syndrome.” I was rejected. THEN, in 2008, I got a disability lawyer, and he handled everything. That was a good thing for me, because for the previous 7 years, my Chiari symptoms progressively worsened until I was nearly totally paralysed and brain dead. Still, my claim was rejected 6 more times, and my lawyer told me “they will usually reject you an average of six times before they start to consider your claim.” I finally won my claim in 2011 - three months after my mom died (and I was starting to move into her house to just die there myself! I was SO unable to do a thing by then) I had not been diagnosed with Chiari’s in 2011 - but just the CFS. My lawyer said that was pretty unusual, because CFS was not on the ‘traditional list of disabilities.’ Non one had even heard of Chiari’s. In 2011, things moved fast from there. I moved to another state where I was diagnosed with Chiari’s - found a SUPERB neurosurgeon who does nothing but Chiari decompression surgery. SSDI pretty much covered the entire surgery costs!!! That was great. What was not great was that because I was diagnosed 10 years after Chiari symptoms showed up, I have permanent brain stem damage. Like you, I’d love to work - even part time. But, I have re-occurring paralysis. But, I am able to put in 32+ hours a week as a volunteer in a creative occupation I just LOVE. As a volunteer, I can show up when I am functional - stay home when I’m not. Works well for me. But, I am always very tight on funds. SSDI does not cover dental, and my teeth are beginning to crumble (three root canals this year). I wish I could find SOME way to earn a few extra hundreds each month - but what jo could I do where the paralysis wouldn’t kick in?!??! Again - like you said - Chiari’s messes up a lot of things.