EDS and the World of Invisible Disabilities
- @blurmag
- Mar 10, 2020
- 4 min read
Updated: May 30, 2020
After the recent Jameela Jamil 'cancelled' attempt, we had to come to you with the facts - does Jameela spend her valuable time making up illnesses, or does the world of disability span past the stereotypical wheelchair bathroom symbol? Written by Rae, photos by Jameela and infographics by disability help pages listed in sources.
Photo by Jameela Jamil via her Twitter (@jameelajamil).
Above see Jameela Jamil, star of the Netflix show 'The Good Place', and activist for many minority groups, focusing on her Twitter and Instagram platforms to inform her audience.
Recently Jameela, possibly the most unproblematic woman ever, has been the subject of mass online abuse, as well as traditional tabloid abuse for her range of ailments - because how could a young woman possibly be disabled?! We have been cautious to not use any imagery from these publications that choose to publically bully women, as they have done with Meghan Markle and Caroline Flack - we here at Blur. don't in any way condone this and hope that cancel culture finally finds it's way back to these outdated newspaper publications sooner rather than later.
Jameela shares with her audience that she has EDS, MCAS and POTs as well as struggling with a variety of mental health issues like anxiety and eating disorders. It's impossible to know from each case what the main trigger for these invisible illnesses have been, but it's common knowledge that once you have one disorder, illness or disease that leads you to be immunocompromised, you're a lot more likely to pick up or be diagnosed with other invisible illnesses, as well as be affected by mental health due to isolation.
"I am tired of the bullying. The taunting over my mental and physical health. ... I'm so sorry to all the people who shared their accounts of not being believed over their chronic health problems and invisible disabilities. I've experienced that my whole life and it's traumatising and isolating"
- Jameela Jamil via Twitter
Photo by What Few Ever Know.
EDS, POTs, autoimmune diseases and other chronic, invisible illnesses are all known for being misdiagnosed or often diagnosed with multiple others and those who suffer from these, especially the younger patients, are often fobbed off as hypochondriacs or questioned by unbelieving people who don't have experience with such illness'. Those unfortunate enough to have crossed paths with such illnesses wouldn't bat an eyelid or accuse Jameela of lying, as in the invisible illness world this is extremely common - you might even be considered lucky to just have the one. Obviously tabloid papers and trolls online don't have the knowledge to understand the spectrum and variety of these disorders, and that is typical of the general population too, but these illnesses are far too common and it's time to educate ourselves.
Not only can chronic, invisible illnesses have multiple and complex symptoms but navigating these while being a young person in Tory Britain is a challenge that many people are having to face - the misunderstanding by friends and family can feel extremely isolating and the dismissal and disbelief from government services like NHS, PIP and Blue Badge used to dealing with older patients can feel world-shattering. Not only is your body not working, but those around you rarely understand - we're yet to find one who's mental health hasn't been affected by the diagnosis, treatment or lack of empathy from others. Pain, digestive issues, poor mental health and isolation is only the half of it when you're getting new diagnosis added yearly.
Have a friend or family member with an invisible illness?
Take a minute to Google and familiarise yourself with the symptoms - things you would never have associated with the illness could be an indicator on why your loved one is acting strange, this will also help show your support.
Be patient - you have no idea what symptom is acting up at what time of the day, being short or distracted is typical but shouldn't be taken personally. Remind them you're there for them, and that you know they weren't trying to be hurtful.
Be an ally - stand up for your friend or others that are being berated due to lack of knowledge, use your position of privilege to educate on how and why the illness could have specific symptoms, be linked to other disabilities and illnesses as well as your own personal experience.
Be kind - there's no need for accusations, if a disabled person shares their experience you are in no position to doubt them or combat it with your experience, especially online.
Until people are no longer attacked for the lack of knowledge based on their invisible illnesses, Blur. are here to help. Have any questions, need any advice or have anything to add? We're not medical professionals, but just reach out - we can direct you to verified toolkits and help guides, and for your peace of mind, we understand.
We wish Jameela the best, and hope that her very public bullying serves as a lesson to not only the tabloids, but the general population too, as this is what Jameela would want. Remember to be kind not only in mental health awareness weeks, and when a tragic incident has occured, but all the time.
Sources: https://twitter.com/jameelajamil
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