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My Experience Filing for Disability Benefits

I had been putting off filing for disability benefits for my UC for many, many years. To be honest, I couldn’t wrap my head around the fact that I was, in fact, “disabled.” I never in a million years thought I’d be unable to have a career of my own and be unable to support myself.

I didn’t want the “disabled” label

Not because of what other people might think (since I wouldn’t have to tell anyone) but in my own mind. In my mind and in my heart, I couldn’t accept the fact that I had to rely so heavily on my family for pretty much everything and couldn’t imagine it would ALWAYS be this way. I couldn’t imagine after working so hard to get through not only high school but college also, that my hard work wouldn’t be rewarded. By “rewarded,” I’m referring to a monetary compensation. Plus, the enormous emotional benefits and personal satisfaction that would come from working and paying my own way through life. Basically, the independence I have craved for so long.

Fast forward to now.

I am 31years old and still on my parents insurance. On one hand, I am extremely thankful I have been able to remain on their insurance because of Obamacare, but on the other hand, I hate knowing I cost my parents so much money in medical bills. I try to pay what I can, but that is usually only co-pays which leaves my parents with the rest of the bills.


An old friend once told me that I’d never have the relationship with my parents that I wanted as long as money was involved. I didn’t know it at the time, but she was absolutely right.

A combination of my dad’s insurance possibly changing coupled with desperately wanting to relieve the financial burden on my parents and start having a little money of my own,

I decided to finally seriously look into social security disability benefits.

After speaking with a disability lawyer, I quickly learned that I wouldn’t qualify for social security disability benefits because I have never been able to have a full time job. Apparently, in order to qualify, you have to have paid a certain amount of money into social security which I haven’t.

My next option was SSI, which is Supplemental Security Income. When the disability lawyer explained to me what I needed to qualify, I knew that if I were on my own, I would without question. However, given the fact that I am still a dependent, my parents assets would be taken into account as well. After speaking with my dad, he told me there was no way I would qualify.

If I failed to receive SSI benefits, the disability process would end from there. If I were approved, I was told they would then start looking at all my medical records to see if there was more I was entitled to.

It ended because as a dependent, I don’t qualify for supplemental income.

This left me feeling a couple things: I felt annoyed because of how much I know I am entitled to and the fact that I have so much guilt about money and my dependency on others. I also felt gratitude. I was grateful that I am not on the streets but rather,  have family who can support me. I wish they didn’t have to but I am still very thankful to have them.

My options now are:

  • Emancipate myself from my parents which would mean I’d have to be on Medicaid or go without insurance
  • Remain a dependent of my parents knowing I won’t receive what I believe I am entitled to or
  • Marry my boyfriend (before I’m ready) so I’m able to get on his insurance.

None of these are great options, but I also know so many of you reading this would give anything to have options like I do.

I may not like them, but I am well aware of how much worse it could be.

I wanted to share my experiences applying for social security disability benefits in case any of you are in a similar position or are unsure about some things.. like I was.

I also wanted to add that you are not alone if you have put off applying for a long time. It is an incredibly difficult thing to accept and while it doesn’t mean it’s forever {some people just need help for a little while and then their disease becomes more stable and things spiral positively from there}, it is still emotionally hard to wrap your head around. Especially since I know those of us with inflammatory bowel disease (IBD) try as hard as humanly possible to lead “normal” lives.

What have your experiences been? We would love to hear in the comments below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    9 months ago

    Thank you for sharing. I hope you get approved at some point and that perhaps the law changes down the road. I know what it’s like to be completely dependent on your parents as an adult and it just makes you feel awful. It’s so nice to hear I’m not alone in this.

    Always dancing,
    Elizabeth (team member)

  • LindaB
    1 year ago

    In a nutshell, I didn’t work long enough, though I tried yo qualify for Disability. SSI, always saiy, medically you qualify, but because of your husband’s income, he makes approx. $100 a yr to much. He would have yo exhaust his retirement fund and then you would qualify. I contacted several disability lawyers, they don’t touch SSI. applications. So my dear, sweet , loving husband and I live on a wing and a prayer. Try to save bits of money here and there for little outings etc.

  • Marisa Lauren Troy moderator author
    1 year ago

    Oh Linda I am so sorry to hear this! It is completely unacceptable how they go about this process! Thank you for taking the time to share a bit with us.. I am sure hearing your story helps others know they aren’t alone. Please know we are always here for support!! Thinking of you and your husband!

  • Sickforever
    1 year ago

    I also have been saying that I am going to apply for disability but have yet to do so because everyone says I will be in for the fight of my life. When your sick most day’s and in bed or can’t leave the house it makes it very difficult just to think about it. I am going to start the process asap simply because I have no other choice. Wish me luck !!!!

  • Marisa Lauren Troy moderator author
    1 year ago

    Reading this comment made me wonder if I wrote it! It is amazing how similar so many of us are 🙂 Wishing you luck and hope it’s not the fight everyone told you/us it would be. Please keep us posted!

  • Sickforever
    1 year ago

    Thank you, I have yet to apply simply for the fact I have been I a flare for quite some time now but I am applying for full disability asap !

  • LindaB
    1 year ago

    I pray you can get it! Every little bit helps, and never let anyone let you think you don’t!

  • Sickforever
    1 year ago

    Linda, thank you for encouraging reply. We do deserve it and if I ever get myself well enough I am applying ASAP !

  • LindaB
    1 year ago

    Deserve it. Sorry, meant that to be written

  • ant17
    1 year ago

    The best option assuming your health permits, is to get a job so you can pay into the system. Depending on the employer, some have disability coverage separate from SS.

    Once in the system, if you find you are unable to work anymore, you may now qualify if you have enough quarters paid in.

    The other options you already stated.

  • Marisa Lauren Troy moderator author
    1 year ago

    Thank you for taking the time to read and share your thoughts. I wish I could work so I could pay even a little bit into the system. Keeping my fingers crossed that changes at some point! 🙂

  • BethH
    1 year ago

    Thanks for sharing your story.
    I have just begun to long, arduous process of filing for disability.
    First, I have to be in mental-health counseling (because my issues include both Crohn’s and depression), so off I go to find a counselor.
    Then, I hae to find a lawyer who will take my case. As I am in my mid-50s, used to work full-time and now cannot, I hope I’ll find a lawyer who’s willing to work with me.
    Finally — my spouse and I are not legally married, only legally Domestic Partners. We may need to undo this and lean on the wills we drew up years ago, simply to avoid complications that would risk her financial situation further. Stay tuned. I expect this to take awhile.

  • Marisa Lauren Troy moderator author
    1 year ago

    Sickforever…. I totally and completely agree 10000% percent.

  • Marisa Lauren Troy moderator author
    1 year ago

    Oh Beth, I am so sorry to hear you’re going through such a long, energy consuming process! Do you mind if I ask who told you you had to be in counseling? It is my understanding that disability lawyers are free unless you win. The firm I spoke with I found online and it didn’t cost me a cent. Of course, your situation may be more complicated than mine so forgive me if I am speaking out of turn.
    I hope things work out with you and your spouse! Such a shame these things have to take its toll on our personal relationships as well. Please keep us posted on your journey and know we are always here for emotional support!

  • Sickforever
    1 year ago

    I hope and pray we both are approved for disability! I also have worked most of my life but I can no longer work either. I truly believe we deserve it. When your illness not only makes us severely sick but also causes us in mental health issues what else are we supposed to do !!!!

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