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Aisling

@my.connective.issues

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It’s Disability Pride month, time to be a killjoy For a while I have been watching the social media “disability community” become something I don’t totally recognize. It feels more and more like people are selling themselves, their “brand” and social media presence based on their identity of being disabled or having a specific disorder or disease. I think in isolated situations of ultra-rare conditions, it humanizes what is understood of as only found in textbooks - but capitalizing on conditions currently in the zeitgeist to push your Brand™️ then taking up space in activist groups without actual contributions to disability justice is selfish and misguided at best. #ehlersdanlossyndrome #disabilityawareness #disabilitypridemonth #sponsored #activism Education has been replaced by trends, scholarships replaced by sponsorship. Having a bunch of brand deals that pay your insane medical bills is a great gig, and I am certain genuinely helps keep some disabled people access care. But misrepresenting yourself as an advocate simply for existing and selling lifestyle products damages the movement. Social media caused this weird consumer neolib mentality where self-love, being perceived as “hot” or “cool” while disabled was somehow disability activism, meanwhile the material conditions of our disabled peers deteriorate and people are suffering. No one can buy their way out of disability, no amount of trinkets change material conditions for us all. Finding out more about these “content creator programs” where people are assigned codes by companies and they receive a commission helped me realize how bad the situation has become. DME companies are now multi-level-marketing schemes. I’m not so privileged to not know the struggle of needing DME and not having the means of accessing it. It’s just seeing it on such a massive scale and done in such a uniform manner to a very specific population seems like a questionable if not predatory business practice. Being a member of an oppressed minority doesn’t automatically make you qualified to be an advocate, and I would never claim that title for myself unless I actually started working on helping making material changes i by @my.connective.issues
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4 days ago
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I remember the first time I heard other people talking about their EDS “flaring” and I immediately knew I was in the wrong place 🚪 #ehlersdanlossyndrome #flare #disabilitypridemonth #eds #autoimmune Being HLA-B27+ is not related to EDS, it’s just another health condition I happen to have. None of these autoimmune diseases are EDS comorbidities, I just have them on top of having EDS. It’s extremely possible to have multiple health problems, even different genetic conditions. Some people with hEDS find that their symptoms worsen with illness or stress. There is ongoing research about some forms of hEDS being a neuro inflammatory condition. This is not my experience, and not consistent with my phenotype. IT’S THE CLIIIIIIIMMMBBBBB 🎶 by @my.connective.issues
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4 days ago
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A non-exhaustive list of adaptive equipment I use to make my life a little easier. #disabilitypridemonth #adaptiveequipment #ot #ehlersdanlossyndrome #disabledlife by @my.connective.issues
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13 days ago
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Skeletal conditions and manifestations do not happen with every subtype of Ehlers Danlos Syndrome. Because I don’t know my subtype just yet, and because I may have overlapping skeletal conditions it’s hard to say if this is exactly related to EDS specifically. I think it’s worth mentioning, because it is associated with some subtypes, and being mixed phenotype either way- there’s a good chance it’s related to my particular connective tissue issues. #ehlersdanlossyndrome #disabilitypridemonth #scoliosis #osteopenia #eds by @my.connective.issues
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16 days ago
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Pre brain mri fit check. Shocked they actually had small pants available for me in all my 145cm glory. #ehlersdanlossyndrome #pulsatiletinnitus #disabilitypridemonth #intracranialhypertension #cci by @my.connective.issues
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19 days ago
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I was checked for pathogenic variants of COL3 and COL5 by my geneticist in 2017 and did not receive a subtype diagnosis from that test. Due to unexplained ongoing health problems, I am going back for more extensive genetic testing. I have spoken at length with the provider and we will be looking not only at pathogenic variants but checking certain genes for deletions using whole genome sequencing. #ehlersdanlossyndrome #genetictesting #raredisease #eds #disabilitypridemonth by @my.connective.issues
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19 days ago
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I don’t remember life without back pain. I was diagnosed with degenerative disc disease and scoliosis as a teenager and had a breast reduction to reduce back strain. While healing and recovery was brutal, I don’t regret it because I think removing the weight from my chest helped slow the progression of degeneration. I have been diagnosed with cervical instability and have been in neck physical therapy for a few years to help with the chronic rotation of vertebrae and trying to build strength in deep flexors. Because of instability I have started to get stenosis in my neck causing radiculopathy. Epidural steroid injections have been helping with pain, as I have been avoiding surgery for a few years now. I live about 5 hours from the closest upright MRI but am hoping to get more complex imaging done in that department, including flexion and extension. #ehlersdanlossyndrome #cci #scoliosis #degenerativediscdisease #disabilitypridemonth by @my.connective.issues
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20 days ago
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I don’t have the “trifecta” commonly associated with #hEDS The last decade of research has really linked these comorbid conditions. Recent research into hEDS being neuroimmume is ongoing. While I have neuropathy and dysautonomia, it is not consistent with these conditions. #hypermobileehlersdanlossyndrome #pots #mcas #disability by @my.connective.issues
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21 days ago
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Sleep study selfie #sleepapneatreatment #complexsleepapnea #disabilitypride #ehlersdanlossyndrome #sleepstudy by @my.connective.issues
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22 days ago
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No, I am not talking about motility. The gastrointestinal tract is made up of, and held together with connective tissue. Because mine is faulty, the structural integrity of my bowels seems to be compromised. #ehlerdanlossyndrome #hernia #rectocele #prolapse #connectivetissuedisorder Avoiding fundoplication surgery for 14 years so far and now on Voquezna and Pepcid. What doesn’t kill you, makes you shit massive amounts of blood for 3 days. Adequate fiber, water, and physical therapy to keep all internal organs internal. by @my.connective.issues
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22 days ago
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July is #disabilitypridemonth Proud to be #disabled and a life worth living I was born with a neurodevelopmental disability #autism and have physical disabilities due to #ehlersdanlossyndrome ♿️ by @my.connective.issues
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24 days ago
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Fragile tissue and surgery don’t mix. We’ve tried. Even routine surgical procedures required to monitor my IBD and hiatal hernia require extreme caution due to previous complications that have had me hospitalized. Elective surgery is out of the question due to my skin’s problems with wound dehiscence. Spine fusion looms but I am doing my best in physical therapy to prolong it as long as I can! Initially my providers didn’t believe me when I said I thought I was having a hemorrhage because they told me I didn’t have any biopsies or polyps removed. “Some bleeding is normal!” as I filled the toilet with blood. I was admitted to the hospital and had multiple failed repeat scopes because my colon was filled with too much blood. Hematology said it wasn’t an issue with my blood, and probably “EDS related”. Three days of infusions and transfusions later, the bleed stopped. They never found the source. “I think my tits just ripped open” was not a phrase I thought would ever come out of my mouth but it was my first surgery and there’s a learning curve when you have a connective tissue disorder- especially when it’s undiagnosed. I don’t regret the surgery at all because it helped with some of my chronic back pain. I just wish we knew then how to better reinforce the stitches, a different wound closure technique, so I wouldn’t have had such a traumatic- physical and psychological- healing experience. #ehlersdanlossyndrome #eds #disabilityawareness #raredisease #healing by @my.connective.issues
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24 days ago
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