A rant about disability and feeling helpless

A small rant to a community who understands what I’m going through.

It’s been over a year since I applied for disability, I got denied the first time and appealed and it has been 6 months with no letter, we’ve called social security at the 4 month mark and only got a ‘well they’re still deciding’ from a very annoyed woman who just wanted to get our call over with asap.

Just a small rant but it is such bs, I’m lucky enough my parents let me stay here but I am constantly bombarded about when I’m gonna get a job, I am going to voc rehab but even they think I’m too disabled to work more than a couple hours a day if even that.

My diagnosis- Erythromelalgia, neuropathy, fibromyalgia, gastroparesis, carpal tunnel endometriosis and who knows what I’m forgetting at this point it’s a lot, my mental health issues is generalized anxiety disorder and major depressive disorder, possible other conditions but not officially diagnosed, Pots syndrome and autism.

I can’t sit without my legs elevated, need a wheelchair when I go out, have extreme stomach pain and nausea just from even drinking water at times.

All I want is a bit more independence you know? Be able to actually have money to budget and not constantly being a leech. If I get denied I don’t know what I’m gonna do, a court date is 3 years out in my state and that was a year ago. I have an attorney who is willing to represent me but another 3 years living like this? I’m turning 20 in less than two weeks.

Sorry I know this is long but I had to vent after keeping this bottled up for so long. Feel free to comment your own stories and struggles or whatever you wish, thank you for listening to me rant.


I do not have EN, but my daughter does and has for the last five years. She is a beautiful 22-year-old girl who cannot work or live autonomously. I so understand your frustration with the system and dealing with people asking when you’re going to get a job. We do live in the state of California and it took me six months to help her get officially disability in our state. It took a lot of phone calls and a lot of follow-up to get this accomplished. I know my daughter feels frustration because she would love to be able to work but because she has EM in her hands, arms, face, and feet she cannot hold a 9-to-5 job. She is still finishing up online school but it is hard for her. Just like you she has her parents to help support and give her a place to live. This is such a debilitating disorder.

I am so sorry that you were having such a hard time with getting disability. I’m not sure about your parents but I do not in anyway feel that my daughter is a leech off of us but understand the feeling of wanting to contribute to your livelihood. Know that there are other people out there and I would just think you courage you to continue to follow up with disability after four months I started calling once a week to make sure that it was getting pushed through the process.

You can do this just continue to push. Sending good thoughts and peace your way.

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Thank you <3 this was really reassuring for me to read and I wish the best to your daughter.

One of my biggest difficulties is I have generalized anxiety disorder as well and phone calls are terrifying for me, my mom however works during all the hours the social security office is open during the week so calling is difficult to say the least.

I’m feeling much better after venting and getting a good nights rest and am ready to be hopeful again. I remind myself that I have it set up with my parents to pay them back for certain things once I have the money to do so. I was lucky enough to get a ps4 earlier this year, if I was a leech my mom probably wouldn’t have gotten that for me haha.

Fingers crossed that disability gets back to me soon, and with a positive answer!

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My advice to you about applying for Social Security disability benefits would be to go to a company who specializes in filing these claims. They get things done a lot faster because they know more about what Social Security wants now days. It seems they don’t pay as much attention to an individual applying for it but more attention to the ones filing on your behalf. They specialize in it and know the correct lingo to use, etc. I went to an upstanding group and they were so kind and helpful. Social Security has made it so complicated for an individual to do. These people who help aren’t always lawyers. They have become experts in filing claims on behalf of those who are disabled. And you do not have to pay anything up front. If you are awarded disability benefits, then Social Security automatically deducts 6% if I’m remembering correctly from your first check which is usually large because it’s retroactive back to when you first applied. Even though you got it started I would highly recommend finding one of these firms because they will know what to do at the level you are in. I hope this helps and good luck.

Oh, the deduction of the 6% goes to pay the firm who helped you to get it.

You have every right to rant. You are so young and to have so many disabilities at one time is understandable that you should rant and holler help! I suffer from EM alone for nearly 15yrs. At the moment I am in remission and have been for a yr. After many treatments and machinery and dope going thru my body, I was turned on to BOB’S PROTOCOL, which is a hot water soak for my feet 2 x a day. Sounds terrible when your feet are already burning up, but after less than a week, my red feet began to burn a little less and color began to turn to a normal color. Within a month I was walking a few blocks and within 3 months I was wearing shoes and began to walk further and 9 months later could walk a month. No more ice baths and no more fans. It has been a miracle for me. I hope you can find something that will help you so that you will be able to get out on your own And feel somewhat whole again. EM is a mean disease. Good luck to you and don’t give up. Patty

I had to pay 25% to my attorney.