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Why the fuck should I have to “perform” my disability to be believed? And other thoughts

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I was going to write a blog post about this but my brain isn’t really functioning. So instead, here’s a brain dump of some of my current “why the fuck” feelings. It’s my blog. I’ma do what I want, yo.

Why the fuck should I have to “perform” my disability for someone to believe me?

Why the fuck does taking pride in my appearance somehow make my explanation of my ill health less legitimate?

Why the fuck did I essentially have to beg someone who worked at the tube station for help when I could barely move and he rolled his eyes until I produced two pieces of evidence that I am in fact disabled?

Why the fuck should I be made to feel bad or lazy because I’m not doing things that I said right from the beginning I wouldn’t be able to do?

Why the fuck should I be told “well that’s life” when I try and explain how I feel my life has been taken away from me and that “no it’s not fucking life” because if I was well enough to do something about it I would?

Why the fuck can’t they find something to help me?

Why the fuck did I have to give a lecture to someone outside of the disabled loos about why I’m “entitled” to use them

Why the fuck did a DOCTOR try to delegitimise my entire diagnosis by telling me I can’t have EDS because my thumbs aren’t hypermobile?

Why the fuck was I told by a PAIN MANAGEMENT SPECIALIST to expect less of myself because I’m unwell?

Why the fuck do I never feel rested?

Why the fuck can’t I find a job that I’m well enough to do that actually pays enough to live off of?

Why the fuck can’t I write a coherent blog post?

Why the fuck is this all getting to me now?

Why the fuck to keep getting support from the government do I have to go through an entire humiliating reassessment to “prove” myself, when the nature of the whole “chronic” thing is that it’s chronic?

Why the fuck do I have to pretend to be ok all the time?

Why the fuck is it getting harder to pretend to be ok all the time?

Why the fuck do people think it’s ok to offer unsolicited advice?

Why the fuck do people think that parroting the pseudo-religious bollocks of “if you just the right way you’ll be cured” is ok?

Why don’t people understand that correlation does not equal causation?

Why the fuck can’t the weather make up its mind?

Why the fuck can’t I just sleep for the rest of the year?

Why am I being “unreasonable” or “dramatic” when this stuff pisses me off?

Why the fuck do I keep trying?

Why the fuck can’t I think of anything else to write?

This post also appeared on the Huffington Post.

28 Comments

28 Comments on Why the fuck should I have to “perform” my disability to be believed? And other thoughts

  1. Sandy
    July 3, 2016 at 11:39 am (1 year ago)

    Yes, I know how that feels. Virtual bunch of flowers winging its way to you via the magic of interwebz ✿ ✿ ✿ ✿ ✿ ✿

    Reply
  2. Francesca Stout
    July 3, 2016 at 1:15 pm (1 year ago)

    Yep, I I have felt all of those things at one time or another. Essentially, we as disabled people want to present ourselves as capable human beings not needing pity, but just needing support in order to lead fulfilling and meaningful lives. But we are living under a government and within a society that forces us to show our weakness and vulnerability at every turn, just to access the support and services we need, and are entitled to. Society as a whole has become obsessed with judging who is ‘deserving’ and ‘undeserving’. This comes from the government imposing austerity and cuts, and insisting that all resources are scarce, and diverting blame away from themselves onto the most vulnerable in society.

    Reply
    • Natasha Lipman
      July 14, 2016 at 10:31 pm (1 year ago)

      Yes, exactly! I definitely feel that it is getting worse and more difficult especially when you have to try so hard to ‘justify why you deserve help’!

      Reply
  3. Olga Mena
    July 3, 2016 at 1:54 pm (1 year ago)

    Because you are NORMAL with NORMAL feelings and NORMAL reactions. Wait and watch. Your most vociferous detractors will COMPLAIN, MOAN, and BORE EVERYONE over the slightest pin prick. You must sympathise with them, after all anyone who cannot accept another’s pain or misfortune without compassion is a WEAK, USELESS, POOR EXCUSE for an INTELLIGENT, SENSITIVE, THINKING being. Big hugs, get well and don’t bother with wankers because the Lord pays debts without money.

    Reply
  4. Helen jones
    July 3, 2016 at 4:13 pm (1 year ago)

    Just wanted to say I know how you feel, it’s shit and i’m sorry you’re thinking and feeling and experiencing these things

    Reply
  5. ZOE
    July 3, 2016 at 6:55 pm (1 year ago)

    Definitely sympathise with how you feel. I have a lot of why the fuck moments myself. No you are definitely not being “unreasonable” or “dramatic”! I think it’s unreasonable for others to think that living with chronic illness shouldn’t make you pissed off, at least once in a while!

    Reply
  6. Michelle
    July 3, 2016 at 7:27 pm (1 year ago)

    I can relate to just about everything you’ve listed. Sometimes we just have to let out a big giant Fuck You when it builds up. I so understand.

    Reply
  7. Silvia Logan
    July 4, 2016 at 1:52 am (1 year ago)

    Natasha, I understand very well the pain and grief that you have to put up with your EDS. I truly sympathize with you in how you are feeling. I would be reacting like that, if I was in your shoes. I know that is unpleasant for you to be in pain. I feel sorry for you.

    Reply
    • Natasha Lipman
      July 14, 2016 at 10:34 pm (1 year ago)

      No need to feel sorry for me, but thanks Silvia!

      Reply
  8. Derrick Wess
    July 4, 2016 at 7:20 am (1 year ago)

    As odd as it may sound, this was a beautiful read. So raw and honest; the frustration just oozes from the screen.

    Reply
    • Natasha Lipman
      July 14, 2016 at 10:35 pm (1 year ago)

      Thanks Derrick! Sometimes only swearing will do!

      Reply
  9. Gayleen Maurice
    July 4, 2016 at 7:29 am (1 year ago)

    Fucked if I know

    Reply
  10. Rita Perry
    July 4, 2016 at 8:57 am (1 year ago)

    Honestly, I don’t know why we have to have it so f*ing difficult! I had my 14 year old daughter hugging me and crying on my shoulder on Saturday night asking why is it *(pain and fatigue flare up )lasting soo much longer this time. She wants her Mommy back. We haven’t eaten proper meals every night for so long and she wants her “happy Mommy” back. How the f*ing hell was i supposed to answer that honestly? Yip. Life sucks, but in the end because we are strong we have to pick ourselves up, thank our fellow sufferers for their love and support and get going again. Ready for the next f*ing battle in the neverending war. Sending hugs!

    Reply
    • jen farrant
      July 4, 2016 at 7:20 pm (1 year ago)

      off, that is painful to deal with

      Reply
      • jen farrant
        July 4, 2016 at 7:20 pm (1 year ago)

        OOFF, stupid autocorrect

        Reply
  11. jen farrant
    July 4, 2016 at 7:20 pm (1 year ago)

    oh dear Natasha, I’m sorry to hear all of that, so many words that don’t even begin to answer the pain….

    Reply
    • Natasha Lipman
      July 14, 2016 at 10:36 pm (1 year ago)

      Thanks Jen! Sometimes a vent is needed every now and then.

      Reply
  12. Kristina
    July 15, 2016 at 1:58 pm (1 year ago)

    Yep, you hot the nail on the head. That was like reading my own words. I have EDS, osteoarthritis, Pots and dysautonomia and really do know how you feel. I particularly find the lack of understanding from within the medical profession frustrating. Somehow I still assume they know better but they don’t. They just like to think they do!
    Thank you for sharing your rant. The more people that read it, the more people will understand (she says hopefully).

    Reply
  13. Rebecca
    July 15, 2016 at 11:54 pm (1 year ago)

    Well done for writing this. I’ll add, why the f* (I don’t swear, you choose to, that’s perfectly fine) can’t I find a doctor who will even work out why I’m in chronic pain instead of shaking their heads. I’m sick of doctors who look at you as if you’re taking up space, wasting their time, or a hypochondriac because you don’t have something they can diagnose instantly, write a prescription and get you out within 90 seconds.

    Why the f*** doesn’t anyone understand that you can have more than ONE permanent illness at a time? And that includes almost every doctor.

    Reply
  14. Shane
    October 17, 2016 at 8:59 am (11 months ago)

    NOT TODAY SATAN NOT TODAY!! The struggle is so fucking real I know this feeling.. it sucks ass! I have EDS 4 -!: j don’t look sick yet but inside I’m falling apart subluxation is horrible I’ve had three surgeries about to have two more.. I shouldn’t have to be a fucking circus clown for you to believe me!!😡😡

    Reply

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