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Invisible Disability Discrimination

For those receiving SSDI benefits, what are your main symptoms and how severe are they?

Have you dealt with others not believing you are disabled because when they see you or are around you it looks to them like you aren't sick at all or aren't sick enough to be considered disabled?

Have you faced discrimination because of your disability? or discrimination/resistance to housing or work accommodations?


  1. I am a single woman in my late 30's and had severe MDD (major depressive disorder) and chronic, undiagnosed symptoms for 15 years up until this past year and a half.

    Now, I've been diagnosed with:


    -connective tissue disease, being treated as lupus and being treated for lupus
    -Narcolepsy type 2
    -A digestive enzyme disorder
    where I lack enzymes needed
    to fully break down starches,
    lactose, and sucrose
    -POTS
    -PMDD- premenstrual major depressive disorder


    None of these are physically visible, but each except for PMDD affect me every day. My PMDD can sometimes be a week long or more and can at times be extremely severe, which makes it even harder around my period.


    The main debilitating symptom for me is fatigue and muscle weakness. And for over a year now I've had debilitating chronic constipation.


    For the past year and a half, I was so sick up until a handful of months ago that I often did not even have the muscle strength to make a meal or take my dogs out on their usual potty walk.


    Now I've been improving but am still dealing with extreme fatigue and a unique kind of constipation that leaves me going to and from the toilet either needing to poop or feeling like I need to poop and not being able to several times a day. I often feel very nauseated after being on the toilet and sometimes feel fatigue as well.


    I know I don't owe anyone an explanation or defense, but I still feel like I need to try to prove to these people the truth of what I'm dealing with. I don't want to be around them when I'm doing okay, or even talk, for example, to my neighbor in passing and have them see me as "perfectly fine" in their eyes and then be able to feel the judgement, resentment etc.


    I'm losing/have lost EVERYONE around me because they cannot understand the actual impact of my conditions in my day-to-day life. My old world and life is completely changing in so many ways I never expected or realized, and it's eye opening, but also isolating.


    My friends all judge me for not working this past year and a half and doing doordash for work as I can.



    My sister who likely has BPD and some very strong narcissistic traits has been especially awful and emotionally, verbally, psychologically abusive to me throughout and we have now had to be no contact for about 6 months.


    I have one supportive brother who has struggled with some of his own chronic health challenges who has taken initiative to call me and who has been empathetic.


    My parents and other siblings pretty much ignore it and treat it as though it's a bad cold that I just need to suck it up and deal with.


    My landlord believed/s I'm either faking altogether, even with a doctor's note saying I'm disabled, or that my symptoms are not severe enough for me to be considered disabled.


    My apartment neighbor who is a 63 year old woman and has had a hip replacement and needs to walk with a cane or walker resents that I'm considered disabled and doesn't believe I am. She makes passive aggressive comments like when I picked my(about 40 pound) dog up and carried her into my apartment she muttered under her breath, well I couldn't lift that. Which some days I can and some days I can't.


    Shortly after the first time my church helped me pay my rent, my landlord began giving me lease violations for things he never did before and things he still allowed other residents to do.


    He's recruiting long time residents to "spy" on me, essentially, to see if my car is here all day, to indicate if I'm working or not.


    Yesterday I had a virtual court hearing for a ticket. I plead my case to the prosecutor and mentioned I'm still waiting on my SSDI approval. She needed to give me her email address and her tone totally changed and she was spelling it out really slowly and then told me slowly what I need to send and then says "does that make sense?" as though talking to a child.


    After I responded she realized that she didn't need to talk to me like that but the switch was there automatically as soon as she heard "disability".


    Similar thing with a professor/the department advisor of mine while I was getting my bachelor's degree. I had an accommodation letter sent in so that one of my professors would extend a deadline I couldn't meet due to a flare. Before that he was on board with me taking 9 credit hours in the summer and we had just talked about it shortly before. After the letter was sent in when it was time for him to sign off on it, he told me that he didn't think I should do 9 anymore and that" frankly, I'm even worried about if you can do one summer course." This was despite my academic performance being the same- A- / B+ range.








    1. I appreciate you sharing a bit of your story.
      My heart goes out to you as you juggle these obstacles.
      Many of our community members have shared their struggles with SSDI. I'm hoping some will chime in here and share their experiences. In the meantime, I thought I'd include this article that may provide some helpful information: https://lupus.net/resources-ssdi
      Wishing you all the best, Doreen (Team Member)

  2. Pain

    1. ,
      Here's hoping you find a bit of relief soon.
      Sending my best, Doreen (Team Member)

  3. Pain, fatigue, these symptoms are so severe that everyday chores are a challenge. Going to the grocery store means that I'll be resting for the next day or so. It just takes every ounce of energy out of me. Insomnia is also a very bad symptom.


    1. So many in this community can relate to your description.
      There certainly is no fatigue quite like Lupus fatigue...add insomnia to the equation and that feeling must be exasperating.
      Sending tons of positive thoughts your way, Doreen (Team Member)

  4. Kidney failure, avascular necrosis in both hips and knees, and on chemo at time of evaluation.

    1. ,
      You truly are juggling quite a bit.
      How are things going?
      Sending you all my best, Doreen (Team Member)

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