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Shame and Guilt

Do you have shame or guilt when needing to rest?

  1. Absolutely! It’s so hard to explain. I work full-time and I was talking to my boss about how fatigued I feel and that I needed flexibility because I might need to leave earlier sometimes. But it just sounded like “I want to go home because I’m tired,” ha. Which is technically true, but it’s also so much deeper than that. I know everyone wants to go home because they’re tired, but how do I explain that my need to rest is not more important than theirs but it is very different?


    Because of this, often times I just push through because I don’t want to be seen as lazy, like I’m playing the victim, or that I’m lying or something like that. I end up pushing myself too hard and pay for it later. There’s always shame for asking and then guilt for doing it when I know my coworkers are still in the office, or my husband still has to work and maybe even harder when I can’t.


    I’m trying to learn to accept my body as it is now and am still learning what it can and it can’t do. But it’s hard to adjust, especially living in a society that values productivity and busyness. Even exhaustion because that means you’re doing things “right”. I think in this culture, everyone feels a little embarrassed/guilty to need to time rest and to actually rest. It hits different when you don’t have an option but to rest to survive and it’s a challenge to explain why you need to because “you don’t look sick”.

    1. that is the worst. Some will never understand how difficult it is to plan with the unpredictable nature of lupus. Sorry that happened to you. ~Racquel~ lupus.net team member

    2. most times, people have NO CLUE what Lupus is. Educating folks seemingly becomes your job. We can't explain what lupus is like because it changes by the minute. Maybe you can get some brochures or fact sheets from Lupus.org or, the Lupus Foundation and leave them in the break area. I've turned my friends and family on to Lupus.net so they can learn from others who have our disease(es). It has changes everything they ever thought about Lupus. Wishing you Blessings, Love and Peace!😇🫂

  2. My manager is great, thankfully! But when you’re first explaining the fatigue to someone and the need to rest, I always feel self conscious. Like I shouldn’t be tired or be asking for accommodations. So I’m learning to ask for things even if there’s stigma around it. Thank you for your encouragement!

    1. it’s hard to get away from pushing ourselves to avoid the stigma. I’m glad you are learning when it’s important to ask. ~Racquel~ lupus.net team member

  3. My shame of my house and the state of chaotic disaster I came home to and am still trying to get clean inside and out. The guilt of my mother in law having to go live with her daughter and burden on my son who was a 18 year old child who in frustration hit me and the state pressed charges and now my husband passed away July 17 so he has no parents my daughters hate me for being sick and disowned me my family ignores me as much as possible I have my Thunder puppy and a friend or two. I can't believe this is my life

    1. I am so sorry
      The stress does not help

    2. oh my goodness, Sweetie. Life can be totally overwhelming and so hard to navigate. Forget the house and yard while you're having a flare. Trust me, folks don't meditate on what our homes and yard looks like. Do the best you can without overtaxing. Breathe, find your "special place" in your house. Someplace you can snuggle into and just lick your wounds until you are settled. God bless you, Brandi❤️😇

  4. All the time. family and friends do not make it easier.

    1. , Yes! It's so frustrating having to face the ignorance of others who don't understand what it feels like to live with lupus. Just because they can't see it on the surface, doesn't mean it's not serious. We hear you.
      Gabby (team member)

    2. Yeah it's hard for family to understand for sure. ~Racquel~ lupus.net team member

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