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#ShitAbledPeopleSay: A hashtag after my own heart

shitabledpeoplesay As you can probably tell, I’ve been in a bit of a sweary, ranty mood recently. Not because anything new has happened in terms of my health. It’s all just the same old stuff but trying to figure out how to live the life I want and achieve those things while navigating a body that pretty much only functions in a way that doesn’t make me want to die when I’m curled up in bed doing nothing for months at a time.

I’ve never been a fan of the way a lot of people who talk about their health have done it. Look, each to their own, but I try to stay away from the over-dramatic “tumblrina” scene. It just doesn’t do anything for me. That being said, I’ve become significantly more aware of the way that people who aren’t disabled speak to me and others about chronic illness and the constant picking discrimination that we face. From pretty much having to beg for help at Camden tube station the other week to being bombarded with the stories of people being dismissed, ignored or minimised because “they look fine”, the chronic illness community is starting to shout about it. And too bloody right. With the cuts in support for disabled people continuing in the UK, the more understanding there is out there, the more chance we have for society to stand up with us and say “this is not good enough and things need to change”.

If you’ve read my blog, you’ll know that I don’t share my experiences to complain. I’m writing about the realities of living with a chronic illness and it’s not complaining when I say that my body has crashed, that I can’t function or work (although I do do plenty of that – sorry mum!) It’s just a statement of fact.

I’m clearly not the only one that has had enough. A hashtag has popped up on Twitter called #ShitAbledPeopleSay, that brings to light some of the things that we have to face every day. Some of my favourites are below. I’d also recommend checking out the long discussion thread on this Project Chronic Instagram post!

 

 

 


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9 Comments

9 Comments on #ShitAbledPeopleSay: A hashtag after my own heart

  1. Linda Orr
    July 17, 2016 at 11:46 am (10 months ago)

    I laughed so hard (in a sick sad way). I have vascular Ehlers and have heard every one!

    Reply
    • Natasha Lipman
      July 17, 2016 at 11:47 am (10 months ago)

      I know, right?! I’m loving it, in a totally sick sad way 😉

      Reply
  2. Sandy
    July 17, 2016 at 2:58 pm (10 months ago)

    A friend of mine last year, on hearing that I have M.E., said, “Oh, yes, yuppie flu!” :-/
    And then there was the time the companion of a person in a wheelchair had a go at me for using the wide checkout in the supermarket because it was ‘clearly only for disabled people’. At that point I was well, but I was with my son who had a diagnosis of Autism and ADHD, and was very definitely exhibiting a whole bundle of symptoms all at once, and I was seriously running out of patience, so I said some things in reply that I’m not too proud of.
    Oh and about three weeks ago when I mentioned my ill health a well-meaning person told me they were not surprised I was tired with a son with ASD and his own ill health (he’s ok now but he was off school for six months). She meant well, but how do you say ‘oh this is so much more than just being tired’?!
    This time around (meaning during this bout of illness – I was first diagnosed 25 years ago) I’ve avoided using a wheelchair because I don’t want to be on the receiving end of either well-meaning comments or snide remarks when I get out of it. In the past I have experienced both. I used to laugh it off but sometimes being unwell makes you more emotionally vulnerable, you know? But generally I don’t even tell people unless I think I can trust them. I used to feel ashamed to admit that I was ill. Sod that for a game of soldiers!

    You have every right to be totally and utterly p****d off by the hand life has dealt you and by the attitude of some people.

    Reply
    • Natasha Lipman
      August 10, 2016 at 9:42 am (9 months ago)

      Amen – couldn’t agree more! I’m sorry to hear that those are experiences that you’ve had. Unfortunately, I think it’s so common for all of us.

      “Sod that for a game of soldiers” is my new favourite thing.

      Reply
  3. Erin
    July 18, 2016 at 9:26 pm (9 months ago)

    My sister wrote me an entire email about how I should be happy I don’t have cancer. My mom has ovarian cancer and I feel more sensitive to cancer as ever. However, it is fascinating how the community has rallied around her, brings her meals, pays her visits, clean her house, etc. because she has a known illness. I am incredibly grateful to everyone who is helping my mom in the journey, but I can’t help but think that those of us with truly chronic illnesses rarely get even an acknowledgement that their condition is real and comes with a lot of struggles. I can’t help but think to myself, if I had cancer, would there be an end in sight, relief from all of this pain. Does that make me a bad person? I don’t know. But I certainly have those days as all EDS-ers/chronic illness survivors do.

    Reply
    • Linda
      July 19, 2016 at 1:33 pm (9 months ago)

      My husband has said many times that cancer would be easier. His friends wife had breast cancer recently. He thought her 9 months of chemo was easier than my last few years of 5 surgeries and three heart attacks. People absolutely don’t get it.

      Reply
      • Natasha Lipman
        August 10, 2016 at 9:43 am (9 months ago)

        I don’t think it makes you a bad person at all – it’s something I’ve felt a lot. With cancer you either get better or you don’t but there’s usually *some* form of treatment plan that many chronic illnesses don’t have. People don’t get it at all.

        Reply
  4. Brain Cancer Babe
    July 20, 2016 at 1:49 pm (9 months ago)

    First, I love this post, and second, I love this hashtag!
    I do have cancer, but I don’t look like the “typical” cancer patient. Ya know, the way someone with cancer is “supposed” to look, i.e. bald, gaunt, sickly, etc. etc. On this topic, one situation a few weeks ago really stands out.
    At a yoga class, I saw an older woman struggling very hard to get her yoga mat into her bag. Given my situation, I try to be sensitive and as helpful as I can when I see someone I think could use just a bit of help. When I asked her if she needed help with her bag, she declined and said that she needed to do it to help herself. Totally understandable! Yet, when I told her how I understood, she looked at me and not so nicely said, “You do?” I smiled at her and said I had a lot of medical issues and yes, I did understand. Her only reaction – “You look so healthy.” It was not expressed as a compliment either. Again, I smiled and said, “Well, yes, but I’m not.” We left it at that.
    So, even those of us struggling with something don’t even recognize others who too are struggling. Sad, but true.
    I hope we never need a hashtag #ShitDisabledPeopleSayToOtherDisabledPeople

    Reply
    • Natasha Lipman
      August 10, 2016 at 9:44 am (9 months ago)

      Unfortunately, that hashtag might not be so far away…!

      Reply

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