No announcement yet.

I don't know what to do

  • Filter
  • Time
  • Show
Clear All
new posts

    I don't know what to do

    I'm 25. I was diagnosed at 21. I've never had much for jobs, and for two years after being diagnosed i remained at home.
    Now for three years I've been working with kids, which i know is hard to begin with but adding MS to that is quite hard.
    For the past couple of months i've just been feeling so tired and can't seem to do much. I don't know if its the MS, the depression or the type 1 diabetes or a combo of all three.

    I'm stuck because i don't know what to do. My mom insists i go to school (and that in itelf is a whole other problem because i can't afford it and when i was diagnosed with MS i was a month into college)
    and my boyfriend says we can find something else for me but i don't know what else i can do.

    My mother also says i shouldn't apply for disability again but she won't ever go into why other than i don't need it. I tried to apply and my case lost.

    I just am stuck because i'm on medicaid and can't make much money or i get kicked off and will have no insurance but i make very little to begin with and its becoming even harder to live on.

    I'm lost.

    If you need it, then yeah, apply for Social Security again. Kind of what it's there for, but if your mom doesn't agree, that could be a whole other can of worms.


      Apply if you're disabled and automatically appeal

      Hi Dotty,

      Of course I don't know your situation or why your mother feels like she does. But with that caveat, I do know about social security disability insurance (SSDI).

      If you're disabled and cannot work, then apply for it. That's what it's there for. It is literal insurance; when you were working you paid for that insurance in case you became disabled. So if you are disabled, use it -- period.

      I've been on SSDI twice in my lifetime. After being on SSDI and recovering some from a major MS attack I went back to work for years. Another MS attack made me go back on SSDI.

      I was told by an SSDI clerk/bureaucrat that when Ronald Reagan was president and running massive budget deficits one way his administration chose to save money was to automatically deny the vast majority of SSDI claims (all but the obvious disability cases). The reason they did this was because too many people were applying for SSDI as a result of the economic depression the country was in early in Reagan's first term. Thus, you should expect to be denied when first applying -- thanks to Reagan that's the way the system now works.

      I have met some MSers who have had their appeal denied and resorted to getting a lawyer to push their claim through (lawyers will do it for a cut/percentage of your back pay). But the bottom line is if you're disabled, use it, you paid for it. Be sure to read all of the various paperwork you get and do when applying. Don't abuse the system since we all rely on it and it's one of the few good things our gov't does.

      Using SSDI money to go to college is wise. As a former professor let me say, beware of student loans -- debt is slavery. Colleges thrive on conning people into believing that since they're educated they're entitled to live a certain lifestyle and that their future earnings as college graduates will allow them to pay off their student loans. Live like a poor person in college and resist the student loan trap. Again, debt is slavery.
      59M / RRMS / Dx1987 / Ocrevus


        Hi Dotty, I'm sorry you're having to face the MS diagnosis so young. I know it can make life seem daunting, but you still have to LIVE your life. And since you're so young, you still have your whole life in front of you.

        Since you mention the fatigue and the "can't seem to do much" but you don't mention any other symptoms. I would be more leaning towards that being the depression talking rather than the MS. I know it's hard to figure out which fatigue is which, but when I started feeling like that, I spoke to my dr and started on an anti-depressant which has helped with my energy and motivation levels. The difference in my life is seriously incredible.

        Not having a plan or goal or clear direction for your future can be depressing and having a chronic illness can be daunting when trying to set goals for yourself. But an MS diagnosis is not the end of the world.

        What were your plans and goals prior to your diagnosis? What were you planning to study in college? Maybe you could start at a community college part time--even if it's one class a semester, it's forward's progress towards a goal. There are scholarships available and ways for low-income students to get an education.

        Being a mom, I can maybe understand where your mom is coming from and why she is pushing you to go to college and not apply for disability again. Moms generally want what is best our kids and we see the potential our kids have and we have confidence in our kids, so part of our jobs is to push our kids to go past their comfort zones and past their perceived or actual limits to try new things. It's how we see them grow and continue to grow. Maybe your mom has the faith in your ability to set goals and succeed, where you are unable to see that right now due to your situation.

        Maybe she feels like applying for disability would hinder your growth as an adult when she believes you are able to do more?

        What does your neuro say about going on disability? Are they on board with it based on their observations?

        I don't want to invalidate your feelings or limitations--only you know the full story of your life. But is yours a situation where you might be using MS to not set goals for a fulfilling life and future for yourself? Knowing that you have MS may actually give you more of a reason to find a job that is less physically demanding. Even if you just take a few college courses that would give you more of an employable skill set (public relations, office management, business writing, data processing, etc. etc.) which would allow you to find a job that suits your abilities and is less taxing on you.

        All that to say, speak to your dr about your depression and then sit down and write out a 1 year plan, 5 year plan and even 10 year plan for what you would like to do with your life and where you would like to see yourself. Have a plan for your future and set goals. Worse case scenario, if things come up, you can adjust and adapt your plan. Best case scenario, your MS is stable and you end up living the life that YOU want for yourself!


          I can understand what you are going through. I was diagnosed at 26 and have been working as much as I can.
          I was terminated from my career in 2016. I have MS, but I have also been diagnosed with sleep apnea as well as narcolepsy.
          I keep trying but people are not wanting to give me a chance. I worked in IT for over ten years. Tried working in a call center doing customer service/high pressure sales for DirecTV. Then I got my license and tried my hat selling supplemental insurance through AFLAC. I was not able to make that work. I worked a few months as a Service Advisor for a Dodge dealership. They sold to another company and I was let go.
          I eventually got another job in a call center for AT&T wireless and DirecTV. I did not like that job because I did not like that I had to try to get every caller to add a line and/or sign up for DirecTV. I got my license for life insurance and tried working with a life insurance company calling people that "requested" information. I was not able to make that work due to not having current leads to call. I actually followed one lead where the man had called about life insurance in July 2018. When I called and spoke to his widow he passed away in May 2017. That must have been some good life insurance if people were calling to get it from beyond the grave.
          I actually have filed for a hearing on my disability and am currently waiting on that. I figure that eventually it will all work out.