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Unread 07-11-2016, 07:37 PM   #1
SpookyKook
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Any Spoonie Cosplayers?

Any of my spoonie brethen out there?

If you're unfamiliar with the term, it basically refers to anyone with an invisible, incurable illness such as lupus, crohns, endo, as well as mental illnesses such as depression or bipolar disorder. I myself have fibromyalgia, a nerve condition that basically causes my nerves to think I am constantly injured. So I hurt. Everywhere. 24/7. Woo. (Got a couple other things too, but there's no real need to go there.)

SPOONIES REPRESENT! *throws horns, hurts wrist*
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Unread 07-11-2016, 07:44 PM   #2
FalconW
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I have autism.
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Unread 07-12-2016, 09:38 PM   #3
Lindiranae
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Hello, fellow spoonies! I have Ehlers Danlos syndrome and borderline personality syndrome. EDS is a genetic, multi-systemic connective tissue disorder, so I have chronic pain, chronic fatigue and all of my joints dislocate at the drop of a hat. There's a long list of secondary issues (basically any system involving connective tissue: skin, muscles, nerves, eyes, etc.) ranging from palpitations and dizziness to IBS. When I'm out and about I normally use a wheelchair, which makes planning my cosplays so that they'll fit and not get too squashed an interesting job!
My BPD is, for the most part, managed with medication and coping techniques that I learned in therapy, but it's very much tied into my pain and fatigue. I find it much harder to cope with anxiety and depression on my bad pain days and vice versa.
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Unread 07-21-2016, 03:36 PM   #4
SpookyKook
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Quote:
Originally Posted by Lindiranae View Post
Hello, fellow spoonies! I have Ehlers Danlos syndrome and borderline personality syndrome. EDS is a genetic, multi-systemic connective tissue disorder, so I have chronic pain, chronic fatigue and all of my joints dislocate at the drop of a hat. There's a long list of secondary issues (basically any system involving connective tissue: skin, muscles, nerves, eyes, etc.) ranging from palpitations and dizziness to IBS. When I'm out and about I normally use a wheelchair, which makes planning my cosplays so that they'll fit and not get too squashed an interesting job!
My BPD is, for the most part, managed with medication and coping techniques that I learned in therapy, but it's very much tied into my pain and fatigue. I find it much harder to cope with anxiety and depression on my bad pain days and vice versa.
Hey thar! My rheumy says I have a very mild form of EDS myself; at least I'm definitely hypermobile. Full blown EDS sounds like the biggest pain in the butt, you have my sympathy. How do you handle the "cosplaying in wheelchair" thing? I always feel so weird and selfconscious if in a costume and wheelin' it for the day. (Does not help that people treat me like a child when I'm in my chair. )
I hear you on the anxiety and depression, I have both. When my pain is bad, it's so hard to put on a happy face and act, well...normal. I just want to stay in bed and watch Markiplier for the rest of my life.
If you don't mind me asking, how old were you when you were diagnosed with EDS? I was 21 when I got my fibro diagnosis, which I've heard is a pretty normal time to get the illness. I think EDS is similar? In that it shows up in the late teens-early twenties, I mean.
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Unread 07-23-2016, 01:06 PM   #5
Lindiranae
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I started manifesting symptoms when I was about eight or nine and diagnosed with hypermobility when I was fifteen. I was told: "take some paracetamol for your imaginary pain, read this pamphlet and join a ballet troupe, you lucky super-bendy person." (I may be paraphrasing slightly ) It definitely got significantly worse between about thirteen and seventeen, and I've heard that EDS tends to crop up with puberty, although now that we know more about it, my mother has noted some likely symptoms that began in my babyhood and that she just thought were normal. She and my dad are both carriers of the gene, although on my mum's side it seems to have manifested as knee and ankle weakness and my paternal great-grandmother was just considered "sickly."

I was twenty-one when I finally saw a specialist in EDS and connective tissue disorders, who joined the dots on lots of non-joint related aspects, like my autonomic issues, "cigarette-paper" scar tissue and chronic fatigue.

I was nineteen when I got my chair (I actually went to my GP to discuss it because I was struggling so badly with walking to use public transport to get to work) but once it arrived, I became completely adverse to the idea, put it in a cupboard and refused to use it until a badly dislocated knee needed nearly six months to sort itself out. After more than a decade of regular (and slowly increasing) use, I don't really think of it any differently to the splints and braces I use to support my more unstable joints during periods of activity but, man, do I hate it for cosplay!

I've found (although I accept that it's just as likely to be my own bias towards the chair and my disability and the fact that, thus far, I only really cosplay from Dragon Age, which isn't as entrenched in the public consciousness and recognisable as big franchises like Marvel) that some photographers seem to be actively put off by the chair, and I've only ever seen one wheelchair shot of one of my costumes, which unfortunately made me look like a beach ball covered in suede!

I've always found that people will talk to my husband (or whomever is pushing my chair) rather than to me, and shop assistants will happily take my card or cash but hand everything back to my attendant rather than to me, but it tends to happen more frequently in the everyday world rather than at conventions, possibly because a lot of stallholders and artists are also seated, so I'm actually at eye level.

My current WIP has long strips of scale maille on the front and back, which I've made with craft foam, so I'm still not entirely sure whether it will survive me sitting in the chair while wearing it, but at least it is a much lighter costume than my many layered Inquisitor so I'm hoping to look a bit less round in it!
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My planned projects:
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Unread 08-26-2016, 12:25 AM   #6
Magyarita
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Aspie here with depression, anxiety, scoliosis, and PTSD. Nice to meet y'all.
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Unread 08-26-2016, 01:23 AM   #7
TeaForThought
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Cosplayer with truncus arteriosus, schizophrenia, depression and anxiety here.

Although to be fair, the mental illnesses take a bigger toll on me than the heart condition. Go figure. A few surgeries later and I don't really have a ton of physical limitations but all it takes is one bad mental health day and basic tasks are a huge struggle.

That's also probably way more than anyone actually asked for...so, oops.
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Thou canst not then be false to any man.”

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Unread 09-24-2016, 03:38 AM   #8
AdventurerEmily
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Eh, somewhat old thread but I've been gone for months so it is new to me...

I have some kind of unidentified autoimmune disorder that shares several symptoms with fibromyalgia, myalgic encephalomyelitis, lupus, and MS (but without the concrete test results that would actually give me a proper diagnosis). Basically I have over seventy symptoms and nothing "physically" wrong with me that can be found in a medical test, despite the fact that there is very clearly something wrong and it has gotten worse. I went from fairly typical (albeit severely asthmatic) 20 year old to a wheelchair-bound hospital-haunter by age 23. We've explored everything from psychosomatic illness to heavy metal poisoning (and every weird "zebra" disease in between). No dice.

C'est la vie. I feel y'all's pain, literally.
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Unread 10-20-2016, 07:13 PM   #9
Hunter_Ratri
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Old and slightly inactive threads seem pretty par for the course with this website these days... I'm back after not having visited snce high school so that's.... nearly 8 years?

But to get on topic. I'm a 24-year-old cosplayer with Type 2 Neurofibromatosis, Anxiety and Depression.
I have issues with my joints too, plus my mother has on a number of occasions said I behave very similar to a person with ADD, but I've never been diagnosed for that... my doctor won't refer me to anyone who can help. She won't even give me any help with a psychiatrist or therapist. Just gives me medication, tells me to look for mental health help on my own and leaves it at that :/ I need a better doctor.

@Lindiranae
Ahh it's nie to see other Dragon Age fans -I'm working on cosplay from DAII for myself for me and my sister... it will take a while haha.

The biggest problem I have with making cosplay is that I become upset and frustrated very easily. My mum has had to force me to stop working on a costume sometimes when she notices I'm becoming too "worked up"... I get there eventually but it takes a lot out of me.
At least it's worth it when the costume is finished
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Unread 10-29-2016, 04:52 PM   #10
Otaku Gunso
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I'm autistic, or on the autism spectrum, or however you say it. I was diagnosed at 19 which was about 3 years after I started cosplaying.
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