Hi Pals! Alright, so you know when you don’t want to
do something just because someone has told you that you have to do it? I feel like that’s my entire life. Currently I am in a chronic pain management
group and it has been really informative and actually a pretty great time meeting other
people who are also experiencing pain, even though there’s quite a bit of an age gap between
me and the other group members. One of our assignments is to create a collage
and the rules of the collage is that there has to be a section where it represents you,
how you experience pain, and how you manage pain. And I have been putting off making this collage. I think it’s because when I start talking
about personal experiences with pain and personal experiences with illness I get just like… I feel weird about it. And I figure if I am going to make this collage
then I might as well put some effort into it and make it something that is true to myself
as opposed to just slapping things on a piece of paper because like that’s probably what
I would normally do. It should turn out cool right? I guess? I don’t know, we’ll see. Currently this is my collage, a blank space. So I am going to go outside and tan and cut
out some pictures, probably cut this in half because I’m not going to be able to fill this. I don’t know if it’s very legible here but
this is it. I think that am just going to talk about some
of the main images because if I was to go through everything on this I would bore you
all to death so… Some images that I have here represent pain
as a physical thing. So like, you got your classic video game screw
driver thing and fire emoji, and how you feel when you’re in pain, or how I feel when I’m
in pain is a mixture of like “should I tell people about this” embarrassment emoji and
like “gaaaaa oh nooo life is weird” emoji. A picture of Sally from The Nightmare Before
Christmas, because she comes apart at the limbs, and that’s like very much the embodiment
of Ehlers Danlos Syndrome in a cartoon character. On this collage I have a bunch of things that
I used to partake in which I no longer do, um because I think that pain is often experienced
as a loss and that’s just kind of like an objective, kind of like the way things are
when you have chronic pain, that’s inevitable, that’s going to happen, such is chronic pain. I have a bunch of doctors and one quote that
has definitely gotten me through a lot of the minsdiagnosises and awful things that
I’ve experienced from doctors which is: “What do you call a doctor at the bottom of their
class? Still a doctor.” Not all doctors are good doctors; it didn’t
take me a long time to realize that but it took me a long time to realize that doctors
are also human and make mistakes, not all of them are great people even. And then I have things that I have picked
up since becoming ill, which is filming and writing more and doing that kind of thing
– less physical work. I also have a picture of my dog because he
is a sweetie and definitely a huge part of feeling emotionally good is like having a
friendly animal around. Finally, I have on here, a picture of Donald
Trump, chronic pain, just like Donald Trump, is shitty and sucks, and you kind of just
want it to go away, but it’s there and you feel like its always been there, and being
ill can make you feel like you’re not a good person and so as a reminder to ill people:
don’t feel like you are on par with Donald Trump. So that’s my collage, in summary, I’ve experienced
chronic illness and pain as loss in my life and that has been hard but I’ve also gained
some other things in my life that maybe I would never have tried if I hadn’t gone down
this path that I’ve gone on. And that’s not to say that am thankful for
my chronic illness, obviously I would never have wanted to experience chronic illness
in the first place but that’s just the way things are and you make the best with what
you’ve got and I feel like I’m doing a pretty okay job at that. Anyway, thank you so much for hanging out,
and tuning in, and liking and subscribing and sharing and doing all the stuff that you
guys do. You are awesome and I hope to see you sooner
rather than later!

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21 thoughts on “LIVING WITH CHRONIC ILLNESS & PAIN | COLLAGE

  1. This was another fantastic video, I have had many of the same feelings you described in the video, including not feeling like a good person, feeling like I was deserving of the pain I've been through.

    I think you are an amazing person and thank you again for sharing.

  2. i love the picture of you in the black dress and the cane. idk, but i think the picture itself is just stunning

    also, the Trump analogy XD

  3. This is so accurate 😜 I love the collage! I commented on your last post about waiting for diagnosis! I'm diagnosed! It's a bitter sweet feeling… I'm happy I finally know what's wrong however it's going to be a long ass journey and I'll be honest I'm freaking out because I don't know how I'm going to balance treatment and my personal life e.g. School and social relationships. It's hard enough being sick and struggling but putting all these added pressures especially when I'm in my last years of high school :/

  4. I was attending a group for chronically ill people and all of them were considerably older than me, it was kind of hard to relate to them because of the age gap, but it was nice to have know that even when you get older, you can find support networks, it has actually given me an idea for a charity for younger people with chronic illnesses, to inform more people of what they are and how they affect people because I didn't even realise that most people aren't in pain all the time

  5. I agree with you that donald trump is a pain LOL …..sorry you have to deal with that, thanks for making videos, they are very informative 🙂

  6. Your collage is awesome! I love the Donald Trump comparison, it's so true. As a fellow EDSer, I need to go & watch Nightmare Before Christmas now. Xx

  7. I did a chronic pain management group too! And I had a similar experience with an age gap. It was informative but I was not in a place to accept the information at the time. I kept getting busted for being on my phone during guided meditation haha. We had to do an art project too but we got to choose our medium and I wrote a song instead of making a collage. I really loved your collage and I'd love to hear more about your time in the program!

  8. I had this exact experience when I went to a pain clinic group for a few months. It was amazing to meet people despite the age gap, I'm glad you're enjoying it pretty lady! I love your collage! I might try & do this too, it looks therapeutic! <3 xxxx

  9. I wouldn't describe D'Bag TeaRump as a chronic illness I'd describe him more like a Hemorrhoid (something that with a good proctologists and a little cutting we can be rid of)😉

  10. Hey, I'm in your chronic pain class & I'm not that much older than you, but the average age is about 60 -65 yrs old. Nice collage, in class next week I'll pretend I haven't seen it . I've been putting it off too…I'll finishes mine today. I love your positive outlook on life. You are resilient, determined, and courageous! We may not see our chronic pain so much of a loss as do some of the older people, maybe because they acquired their pain later in life & have more difficulty adjusting, or may have suffered in pain, silently, for a very long time, not knowing why, receiving wrong diagnosis', thus overtime breaking down their confidence.
    I strongly believe it's easier for us, the younger generations – Gen Xers & Millennials, to cope with & manage our chronic pain, while being satisfied & happy in life, because we face far less external pressures to conform to assigned sociocultural roles, values & norms strictly enforced to gender roles, age, ethnicity, etc…

  11. that Donald Trump analogy was really funny, and the collage was really good. I think mine would involve knives and needles and other awful sharp things for pain and music notes for coping since singing helps me block it out. I once did an improvised parody of "I feel pretty" called "I feel shitty"

  12. When I was I was 11 I was diagnosed with a chronic bone disease. I am currently 18 and in my last year of high school. More and more I am finding it harder to connect with ppl through relationships, as well I want my class mates to know what I have been through and what I am going through but I can't talk about my condition seriously without sounding sarcastic or I will get upset and cry. tbh I don't know why I am writing here I guess I just want to get some stuff off my chest.

  13. I have Ehlers Danlos Syndrome (hypermobility type). I woke up to a well written article about your vlogs today, and I would love to connect with you personally! I am part of a charity that raises awareness and understanding in the medical community for EDS, called the ILC foundation. We are going to be organizing peer support events in the near future and would love to have you come!

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