Charlie Fitz

@charliejlfitz | contributor
Charlie is currently studying for her Masters in Comparative Literature. She has multiple associated chronic illnesses including; Gastroparesis, Endometriosis, Hypermobile Ehlers-Danlos Syndrome and Factor V Leiden deficiency. She is interested in the relationship between illness, disability and identity, the experience of the 'sick' person and societal roadblocks on the way to diagnosis. She hopes to explore these ideas in relation to art, literature and philosophy at doctorate level.
Naomi Chivers

A Zebra's Battle: Living With Ehlers-Danlos Syndrome, Hypermobile Type

One of the first things medical students are taught is, “When you hear hoof beats, think of horses, not zebras.” Put simply, the most obvious answer is usually right. This often is the case, however, as rare as zebras are, they do still exist. Not only does this make getting a diagnosis of a rare condition a long and difficult process, but the view “only the obvious is possible” can spill into public perceptions. Is it all in my head? Despite experiencing symptoms from childhood, I was 18 before I was diagnosed with Ehlers-Danlos syndrome – hypermobile type (EDS-HT). I had been experiencing pain along with partial and complete dislocations my whole life, however, every medical professional played it down and described it as just being part of who I was. Not only is EDS-HT a rare condition, but for the most part, the symptoms are invisible. When you combine a lack of awareness amongst medical professionals with a lack of visible evidence, you can feel like you are fighting a losing battle. I began to question whether the symptoms were all in my head. But you don’t look sick! This is one of the most common things people say to me when I talk to them about EDS-HT. This statement has often puzzled me. What does sick look like? Surely it looks different in every person. So where does our perception of what sick should look like come from? If you think about the images of disability we see on a daily basis, they are usually the same – whether it is a parking space, an access door, or council-issued disability badges, their logos are all of a person in a wheelchair. Without realizing it, we have had a picture painted for us of what a person with disability should look like when in fact the image only represents a percentage. Just because you can’t see it, it doesn’t mean it isn’t there. People often don’t show compassion towards someone with an invisible illness. They can’t understand there is a real problem. As a result they question the reality and severity. Repeatedly stating, “I am in pain” leaves people feeling uncomfortable or thinking you are looking for attention. So what is the solution? My solution to this situation is actually be part of the problem. I adopt the role of a healthy person, I act the way people think a “normal” person should act and make little or no reference to being in pain. This avoids any awkwardness or need for me to defend my condition or my right to be in pain. However, this in itself can be extremely exhausting and isolating. Having an illness which is largely invisible does come with some advantages. With an invisible illness you can avoid a lot of common misconceptions. Unless I choose to disclose my diagnosis people are unaware of it, so when I discuss carrying out an activity nobody, questions my ability to do it. It is possible for me to paste on a smile and get through a day without anyone realizing I am in any pain at all. I can even usually manage my dislocations without drawing any attention to them. There is a substantial lack of knowledge and awareness surrounding EDS-HT, not just across society but also within the medical profession. Despite being diagnosed for over 10 years, I still see doctors now who try to dismiss my symptoms and my diagnosis. The development of social media has opened up a whole new community to me. A community of other zebras fighting the same daily battles as I am. There are thousands of people with similar experiences to me, who have fought for diagnosis and support, who are not acknowledged by the people around them as having an illness. Being part of this community helps to deal with the isolation that comes with. People with illnesses are wrongly seen as being weak and incapable. Those with invisible illnesses are amongst the strongest people I know. It takes a strong person to go about their everyday lives while dealing with numerous symptoms nobody knows about. Awareness is key. The most important thing you can do is to educate yourself, learn about EDS-HT and invisible illnesses. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Peerajit

Charlie Fitz

Navigating the Space Between Visible and Invisible Disability

I recently started using a rollator (outdoor walker). Before getting this mobility aid I had completely stopped leaving the house by myself, only leaving the house with the assistance of my partner or my parents less than once a week. Since getting my walker, I have been going out at least once a week by myself, and between three to four times a week with the assistance of someone else. Although my partner and I are often using my walker as more of a wheelchair, this device has given me back a lot of the freedom that had been taken from me. I use the word “taken” because in theory having an illness or impairment should not restrict a person from taking part in society to the extent it does now. We live in a world with the resources, money and technology to create accessible societies, however accessibility is not viewed as a priority by many. People with the privilege of an abled body, particularly those in positions of power choose to ignore issues of accessibility, while the part they play in disabling others remains invisible to them. I view disability through the social model, which sees disability as an “oppressive social construct.” This model sees the barriers faced by disabled people when trying to access society as a result of the inaccessibility of that society rather than the impairment of the person. I was diagnosed with hypermobile Ehlers-Danlos syndrome in February, but have had health problems my whole life and have been significantly ill for the last four years. My mobility was hindered by fatigue, pain, spinal instability, spontaneous subluxation of various joints, dizziness and fainting. Aside from my mobility issues, I was struggling with the invisible nature of my disability in public spaces. As a person in my 20s who often appears able-bodied, I would struggle if I was expected to stand on public transport. I also found that people would push past, into or up against me in busy public places causing pain, disorientation or unnecessary stress, which would lead to an increase in heart rate and sometimes fainting due to postural orthostatic tachycardia syndrome (POTS). My judgment clouded by my own able-bodied passing privilege, I had perhaps naively thought making my illness and disability more visible would signal to other people to take greater care around me in public spaces, allowing me adequate personal space and offering me assistance on and off of public transport. However something very different happened. Although my disability was now visible, the person with that disability had become completely invisible. People were so desperate to not get stuck near or behind me that they would violate my personal space to a greater degree than before, as if I was not there at all. Avoiding eye contact, strangers rush in front of me, some tripping over the wheels of my walker. Not once have I been offered assistance getting off or on public transport, however people have felt comfortable enough to talk loudly about how sad they find my situation. Strangers have felt the need to tuck my label in without asking, tell me they will pray for me or that I am far too young to need a mobility aid. Despite all of this I am very quickly falling in love with my rollator. Yes, I experience far more ableism than before. Yes, I am quickly discovering just how inaccessible most public spaces really are. Yes, I still tire easily and would benefit from an electric wheelchair or scooter. Yes, being ill and disabled is difficult in many ways. Yes, I am disappointed in how I have been treated in public spaces. But no, I do not need anyone’s pity for having to use a mobility aid. Mobility aid users and people who are denied access to society in many ways need positive support. They need accessibility to become a priority in how we all interact in society. In the causes we support, in how we vote, in how we act in public spaces, on public transport, when driving cars, when designing new buildings and spaces, and in how we conduct ourselves online. Mobility aids should never be looked down on or viewed negatively. Getting my mobility aid has been extremely empowering. If you see someone in the street with a mobility aid, do not pity them, but think about how your actions may able or disable them to be in society.

Charlie Fitz

Navigating the Space Between Visible and Invisible Disability

I recently started using a rollator (outdoor walker). Before getting this mobility aid I had completely stopped leaving the house by myself, only leaving the house with the assistance of my partner or my parents less than once a week. Since getting my walker, I have been going out at least once a week by myself, and between three to four times a week with the assistance of someone else. Although my partner and I are often using my walker as more of a wheelchair, this device has given me back a lot of the freedom that had been taken from me. I use the word “taken” because in theory having an illness or impairment should not restrict a person from taking part in society to the extent it does now. We live in a world with the resources, money and technology to create accessible societies, however accessibility is not viewed as a priority by many. People with the privilege of an abled body, particularly those in positions of power choose to ignore issues of accessibility, while the part they play in disabling others remains invisible to them. I view disability through the social model, which sees disability as an “oppressive social construct.” This model sees the barriers faced by disabled people when trying to access society as a result of the inaccessibility of that society rather than the impairment of the person. I was diagnosed with hypermobile Ehlers-Danlos syndrome in February, but have had health problems my whole life and have been significantly ill for the last four years. My mobility was hindered by fatigue, pain, spinal instability, spontaneous subluxation of various joints, dizziness and fainting. Aside from my mobility issues, I was struggling with the invisible nature of my disability in public spaces. As a person in my 20s who often appears able-bodied, I would struggle if I was expected to stand on public transport. I also found that people would push past, into or up against me in busy public places causing pain, disorientation or unnecessary stress, which would lead to an increase in heart rate and sometimes fainting due to postural orthostatic tachycardia syndrome (POTS). My judgment clouded by my own able-bodied passing privilege, I had perhaps naively thought making my illness and disability more visible would signal to other people to take greater care around me in public spaces, allowing me adequate personal space and offering me assistance on and off of public transport. However something very different happened. Although my disability was now visible, the person with that disability had become completely invisible. People were so desperate to not get stuck near or behind me that they would violate my personal space to a greater degree than before, as if I was not there at all. Avoiding eye contact, strangers rush in front of me, some tripping over the wheels of my walker. Not once have I been offered assistance getting off or on public transport, however people have felt comfortable enough to talk loudly about how sad they find my situation. Strangers have felt the need to tuck my label in without asking, tell me they will pray for me or that I am far too young to need a mobility aid. Despite all of this I am very quickly falling in love with my rollator. Yes, I experience far more ableism than before. Yes, I am quickly discovering just how inaccessible most public spaces really are. Yes, I still tire easily and would benefit from an electric wheelchair or scooter. Yes, being ill and disabled is difficult in many ways. Yes, I am disappointed in how I have been treated in public spaces. But no, I do not need anyone’s pity for having to use a mobility aid. Mobility aid users and people who are denied access to society in many ways need positive support. They need accessibility to become a priority in how we all interact in society. In the causes we support, in how we vote, in how we act in public spaces, on public transport, when driving cars, when designing new buildings and spaces, and in how we conduct ourselves online. Mobility aids should never be looked down on or viewed negatively. Getting my mobility aid has been extremely empowering. If you see someone in the street with a mobility aid, do not pity them, but think about how your actions may able or disable them to be in society.

Charlie Fitz

Navigating the Space Between Visible and Invisible Disability

I recently started using a rollator (outdoor walker). Before getting this mobility aid I had completely stopped leaving the house by myself, only leaving the house with the assistance of my partner or my parents less than once a week. Since getting my walker, I have been going out at least once a week by myself, and between three to four times a week with the assistance of someone else. Although my partner and I are often using my walker as more of a wheelchair, this device has given me back a lot of the freedom that had been taken from me. I use the word “taken” because in theory having an illness or impairment should not restrict a person from taking part in society to the extent it does now. We live in a world with the resources, money and technology to create accessible societies, however accessibility is not viewed as a priority by many. People with the privilege of an abled body, particularly those in positions of power choose to ignore issues of accessibility, while the part they play in disabling others remains invisible to them. I view disability through the social model, which sees disability as an “oppressive social construct.” This model sees the barriers faced by disabled people when trying to access society as a result of the inaccessibility of that society rather than the impairment of the person. I was diagnosed with hypermobile Ehlers-Danlos syndrome in February, but have had health problems my whole life and have been significantly ill for the last four years. My mobility was hindered by fatigue, pain, spinal instability, spontaneous subluxation of various joints, dizziness and fainting. Aside from my mobility issues, I was struggling with the invisible nature of my disability in public spaces. As a person in my 20s who often appears able-bodied, I would struggle if I was expected to stand on public transport. I also found that people would push past, into or up against me in busy public places causing pain, disorientation or unnecessary stress, which would lead to an increase in heart rate and sometimes fainting due to postural orthostatic tachycardia syndrome (POTS). My judgment clouded by my own able-bodied passing privilege, I had perhaps naively thought making my illness and disability more visible would signal to other people to take greater care around me in public spaces, allowing me adequate personal space and offering me assistance on and off of public transport. However something very different happened. Although my disability was now visible, the person with that disability had become completely invisible. People were so desperate to not get stuck near or behind me that they would violate my personal space to a greater degree than before, as if I was not there at all. Avoiding eye contact, strangers rush in front of me, some tripping over the wheels of my walker. Not once have I been offered assistance getting off or on public transport, however people have felt comfortable enough to talk loudly about how sad they find my situation. Strangers have felt the need to tuck my label in without asking, tell me they will pray for me or that I am far too young to need a mobility aid. Despite all of this I am very quickly falling in love with my rollator. Yes, I experience far more ableism than before. Yes, I am quickly discovering just how inaccessible most public spaces really are. Yes, I still tire easily and would benefit from an electric wheelchair or scooter. Yes, being ill and disabled is difficult in many ways. Yes, I am disappointed in how I have been treated in public spaces. But no, I do not need anyone’s pity for having to use a mobility aid. Mobility aid users and people who are denied access to society in many ways need positive support. They need accessibility to become a priority in how we all interact in society. In the causes we support, in how we vote, in how we act in public spaces, on public transport, when driving cars, when designing new buildings and spaces, and in how we conduct ourselves online. Mobility aids should never be looked down on or viewed negatively. Getting my mobility aid has been extremely empowering. If you see someone in the street with a mobility aid, do not pity them, but think about how your actions may able or disable them to be in society.

Paige Wyant

32 Tattoos Inspired by Ehlers-Danlos Syndrome (EDS)

Article updated August 15, 2019. If you or a loved one struggle daily with a chronic health condition, sometimes a visual symbol of this battle can serve as a reminder to keep persevering as well as a way to raise awareness. Many of those with Ehlers-Danlos syndrome have gotten meaningful tattoos to spread the word about the rare condition and show their support for EDS zebras everywhere.We wanted to see some of the creative designs those with EDS have chosen to commemorate their battles, so in partnership with the Ehlers-Danlos Society, we asked their community as well as our Mighty community to share photos of their tattoos that were inspired by Ehlers-Danlos syndrome (check with your doctor about any potential side effects of getting tattooed). Here’s what the communities shared with us: 1. “This is my tattoo for my beautiful daughter Bella. She picked the colors herself. Since her diagnosis, she has met every painful day, dislocation, subluxation, surgery, hospitalization, and challenge with dignity, tenacity and courage far beyond her 9 years of age. She now has a feeding tube placed and is attending regular physical therapy. She still has bad days, and she is aware of the reality that she always will for the rest of her life, and we deal with these bad days together as a family, and we will live every good day we have to the fullest. Now, she is anxiously awaiting her Make a Wish trip to Disney in a few months.” 2. “After my first appointment with a specialist, I was incredibly emotional. Putting a name to all the struggles I had faced in my life was a huge deal. My parents and I were emotionally exhausted. I have wanted this tattoo for years. It says ‘child of life’ in Hebrew. It reminds me every day to take joy in my life and that I was born to shine bright. Nothing can dim that, not even EDS.” 3. “My son was 4 when diagnosed; we had no idea EDS even existed. This tattoo is the awareness ribbon fallen apart, much like the EDS collagen. The top forms an ‘S’ (both my sons’ names start with ‘S’). Stars in zebra with their favorite colors. I have a purple star but it is empty as I do not have EDS. Its been a great way to spread awareness.” 4. “Reminds me to be strong and have faith! Love the serenity prayer. It’s helped get me through day to day when I’m in pain!” 5. “In February I was diagnosed. The struggle is every day. That’s why I need to be brave.” 6. “This is Zed the zebra. Us EDS’ers often get told we are zebras because doctors are told when they hear hoofbeats think horses, not zebras. I also chose this ‘wobbly’ design because we are quite wobbly!” 7. “I think this one is pretty self-explanatory… But I will never let EDS beat me. I’ll keep punching back!” 8. “I got my tattoo for my 21st birthday. Turning 21 meant I have been in constant pain for over half of my life. My tattoo is there to remind me I’m stronger because of my pain and I can make it through any bad day because I have made it through them before.” 9. “Coverup from a surgery scar (well, two surgeries). I think the zebra speaks for itself!” 10. “I wanted to take control of my body. Because my husband works and we don’t have kids, I’m alone a lot. When I’m in pain, or feeling sick, I want my husband. Because he can’t always be here, I got the last stanza of an ee cummings poem, our poem (read at our wedding), as a touchstone. Because I carry his heart. I carry it in my heart.” 11. “Here’s mine. I got it to represent the struggle I and other patients have to get diagnosed after having my symptoms dismissed for a decade.” 12. “I had nine operations and wanted to take back control over my body. This is my biggest piece and it’s not finished, but it represents me not letting EDS dominate my body.” 13. “When I attend my medical appointments and feel like I am not being heard and doctors are skirting around my EDS, I look to my arm to remind myself I am a zebra with integrity and have a voice. My voice deserves to be heard. When this does not resonate I am confident to make the decision to look for a care provider who will work with me and truly want to understand.” 14. “‘Keep moving forward.’ My mom liked this one and reminded me of it constantly after my colectomy (I have vEDS).” 15. “The top one is an acronym – I got it before I was diagnosed. I was going through so many health issues with no answers. I’m a firm believer that things happen for a reason, so I got this acronym to remind me when I felt my worst. EHFAR = Everything Happens For A Reason. Once I was diagnosed with hEDS, I got this butterfly tattoo wrapped in the EDS ribbon. The butterfly is a reminder of how shor t life is and that we need to live it to the best of our abilities.” 16. “I have a medic alert tattoo. It comforts me to know if I become unable to speak, my tattoo can speak for me. And I got the lily with it to remind me there is more to me than being sick.” 17. “Guess it also speaks for itself! We’re all zebra warriors! And right next to it is tape for my wrist.” 18. “It’s to do with the heart condition I have which is caused by EDS and the journey it has taken me on. Due to an amazing charity, Flying Scholarships for Disabled People, I will be learning to fly at the end of this month.” 19. “A reminder that tomorrow is another day and has the potential to be better than today.” 20. “I was recently diagnosed. The tattoo artist said, ‘You want it upside down?’ I told him this is for me, not for anyone else. I chose this design because the zebra, I call her Sarah, looks fierce, and whenever I feel weak, I just look at her to remind me of how strong I really am.” 21. “Because of my EDS diagnosis I started to live way outside my comfort zone. Living outside that zone has given me so many so more experiences than if I was healthy.” 22. “Mine are pink water lilies. I got mine before my diagnosis, but water lilies close every night and open back up in the morning. Every day the lily opens to start a new day. I’m still here. I’m still pushing on. I’ve got my diagnosis. I am not a hypochondriac. I suffer, and I love my lilies.” 23. “My friends and family often call me T-rex because my arms are short and I can never reach anything… So with the help of pickers or grabbers I’m unstoppable. I have vEDS.” 24. “A bouquet of spoons for the spoon theory, but it’s due to my chronic pain from EDS.” 25. “This is a tattoo on my side. I got it before I knew I had EDS, but I have faced various health challenges all my life. It is a quote from Shakespeare: ‘My drops of tears I’ll turn to sparks of fire.’ (Henry VIII, Act II scene iv). I used to do a lot of acting in Shakespeare plays and this inspires me to turn the horrible things life has given me into fuel for my strength and compassion for others.” 26. “The quote is from a saying: ‘You wake up each morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.’ And the zebra ribbon is in the little girl’s hair. The monster for us all I’m sure is EDS.” 27. “My blonde girl tattoo represents me. I placed her there below my knee because that is where my bone was fractured. The crack in her face represents the crack that was in my bone. Three of the ligaments in my knee had torn, my ACL completely ruptured, and without the support of those ligaments my leg bones smashed into each other, cracking my tibia plateau like an egg with the crack extending down my tibia. I wasn’t able to walk for months. Ligament and tendon tears/ruptures are a common complication of vascular Ehlers-Danlos syndrome. Below my girl is a zebra print awareness ribbon. The zebra print awareness ribbon represents rare diseases. vEDS is a rare disease with no cure or treatment.” 28. “‘I will always land on my feet.’ My journey with many things, including Ehlers-Danlos, has not been easy but I’ve always been OK. I have an emotional support cat for my depression that is triggered by my EDS and of course, I am flexible, much like a cat.” 29. “I have chronic epicondylitis in both elbows (due to EDS) that has really affected my daily functionality. But I like to see humor in everything, so I make myself laugh every day when I look at my ‘out of order’ post-it note tattoo just above my left elbow.” 30. “I got the death’s head moth with a zebra print body for EDS. It also has my own ECG heartbeat coming out of each side. I got it because EDS is like being half a person, half dead and half alive. Some days I don’t feel human at all, more like a zombie, so I wanted the moth with the symbol of death on its back to show how it feels.” 31. “It’s from the Lion King Broadway soundtrack. The top line is in Swahili, the bottom is mirrored: ‘There’s no mountain too great, hear the words and have faith.’ I have vEDS.” 32. “I got a watercolor portrait of a zebra on my leg for EDS. Obviously the zebra is the mascot for EDS, but [I got] the watercolor form to show that not everything is distinct, and a lot of things flow into one another.”

Charlie Fitz

#HotPersonInAWheelchair Hashtag Challenges Ableism

There is a major lack of diverse and positive representation of disability in the media and popular culture. As someone who is fairly new to this, it has very real and powerful consequences for me. Luckily the internet and social media offers a space for communities to be formed and diverse voices to break through the ableist narratives that monopolize the already scant representation of people with disabilities.  And for that I want to thank the disabled communities of Twitter for pushing to change the narrative. You have unknowingly pulled a stranger back from the edge; who knew a hashtag could be so powerful? I am fairly new to mobility aids, recently getting a cane and a walker. As it turns out though, I am not that new to disability. After three years of debilitating illness, it took a long-awaited and hard-fought-for diagnosis to realize how empowering mobility aids could be in my situation. And even then it was not a healthcare professional who helped me get to that realization, but online chronic illness and disability communities. After being diagnosed with hypermobile Ehlers-Danlos syndrome (HEDS), a multisystemic, degenerative connective tissue disorder, I felt my use of mobility aids was validated. But I still carried a lot of doubt, fear and I’m ashamed to admit it, embarrassment about the idea of using mobility aids. Of course there is nothing wrong with not wanting to be ill, but my initial feelings about mobility aids were polluted by ableist stereotypes and misconceptions about disability. I should not have waited to be medically validated to consider using mobility aids, and I certainly should not feel embarrassed or have to fear using them. Unfortunately there is a serious lack of informative, diverse and positive representation of disability in the media and popular culture. The ableist stereotypes perpetuated by films like “Me Before You,” in which living boldly is only possible for able bodies, have a very real impact. Popular culture is both informed by and informs society. So when I began discussing mobility aids, I was met by some with horror and a feeling that I was “giving up on life” rather than empowering myself. In the past couple of weeks an incredible hashtag has been making waves across disabled communities on Twitter — #HotPersonInAWheelchair. The hashtag is a response to a tweet from 2014, in which Ken Jennings wrote “Nothing sadder than a hot person in a wheelchair.” The hashtag was initiated by Annie Elainey, an intersectional activist, and the posts are full of joy and beautifully directed rage. People with disabilities from all corners of Twitter are reacting to Jennings’ ableist tweet with acts of celebration and protest. Members are proudly presenting their sex appeal, their individuality and their resilience. Oh we’re doing this? Okay! #HotPersonInAWheelchair pic.twitter.com/YZGVgpAOrm— Bella (@BELLAsayswhat_) April 23, 2018 I don’t know why this tweet has resurfaced now, but I am all for the response. I am from the U.K. and have never heard of this Ken Jennings person and don’t wish to learn anything further about him now. In the U.K. we also have a serious problem with ableism being spouted under the guise of comedy. Ricky Gervais is a prime culprit, and these narratives are going unchallenged and unnoticed in the mainstream, allowing the culture of ableism to thrive to devastating effects. There is a polarized idea of disability represented in popular culture. There are the superhuman disabled people winning Olympic medals, all power to them. Or there are the narratives like “Me Before You” in which disability is objectified through an ableist lens of hopelessness, tragedy and a life not worth living. There is very little in between, and these two polarized stories have one thing in common. All responsibility for disability is given to the disabled person. They are either revered for overcoming their impairment or pitied as their impairment is seen as too severe to bear. The responsibility is very rarely laid at society’s door. #hotpersoninawheelchair[Image: light-skinned buzzed-head person in wheelchair on sunny day. A rainbow flag flies from the back of the chair] pic.twitter.com/VosSi5SnNq— BeingCharis (@BeingCharisBlog) April 22, 2018 Disability is often viewed through two models,  the medical model and the social model. The dominant narrative views disability through the medical model. The medical model of disability as outlined by the charity Scope states, “people are disabled by their impairments or differences.” The social model of disability was developed by disabled people and is the view that activists and advocacy groups are fighting for. It states that “disability is caused by the way society is organized, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.” The ableist, cheap comedy of the likes of Ricky Gervais relies on and upholds the medical model, letting society off the hook for its failures. With the medical model being upheld, all the responsibility is left on the disabled person. In the current right wing political climate in the U.S. and U.K. with Trump and May at the helm, the rights and lives of disabled people are at risk. People are dying, which is no joke. The disabled community of Twitter, along with intersectional disability activists are challenging this dominant ableist narrative. The #MeToo movement has demonstrated the power of social media and the hashtag by breaking into mainstream popular culture. Only time will tell if this movement leads to long term, real change. Regardless, the collaborative news feed now being spontaneously curated under the hashtag #HotPersonInAWheelchair has given this disabled person #DisabledJoy, so whether you’re disabled, abled-bodied or not really sure, I hope you’ll get behind it. #DisabledJoy #DisabledAndCute #HotPersonInAWheelchair #BabeWithACane #DisabledResist #TheFutureIsAccessible

Charlie Fitz

How Our Culture Is Still Hungover From Diagnosing Women With Hysteria

I recently began comparing my experience with illness and getting diagnosed for an ongoing court case in which I am attempting to represent myself. I have had to learn a lot about the human body and medicine, reading studies and papers which would have previously been completely unintelligible to me. I have had to compile information about myself, my past, my family history. I have had to track down people and records; which although about my body, often getting access to has been near impossible. I have then had to present my findings to consultant after consultant, trying to diplomatically steer them to the possibility that, although I am “young,” I could have a certain illness. Beginning with the most likely, chipping away at the possibilities. Blood tests, scans and procedures have either crossed names off the seemingly infinite list or added a new term to the diagnosis. Just as I feel I am making progress new, unexpected symptoms pop up to complicate things further. Having entered into the realm of rare disease, this task of getting diagnosed has seemed mammoth. A couple weeks ago I visited a rheumatologist armed with a five page document presenting my case. A folder of supporting material: scans, doctors letters, hospital admissions – and I was ready for battle. During my 26 years of unusual health and four years of debilitating, life-threatening illness, I have experienced many battles of this kind. As it seems, many of the healthcare professionals I have come into contact with don’t think young women get ill, especially women that look OK. When I had a clot in my lung, my pain was not believed. I could feel the clot burrowing like a tunnel through my chest. After many emergency visits, begging and pleading with doctors, a CT scan confirmed what I could feel – a pulmonary embolism. Last year when a surgeon found parts of my womb growing in the wrong place (endometriosis), I thought of the numerous doctors who had convinced me for nine years that periods were just that painful. And still, after a gastric emptying scan that confirms my stomach is paralyzed (gastroparesis) and two gastroenterologists confirming and treating me for this illness, I have been met with ignorance by a consultant in another department who told me the illness did not exist. My stories are not wholly unique and it seems there is cultural stigma around the health and pain of young women, possibly some hangover from the history of diagnosing females with hysteria. But the appointment this Saturday was not a battle. I presented my information to an understanding, receptive listener. She could see that to get to this place, all other, more obvious causes for my multi-systemic symptoms had been ruled out. She read my five page document, gave me a thorough examination and a clinical diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS), previously known as EDS type 3. She also said a diagnosis of postural orthostatic tachycardia syndrome (POTs) was likely and has recommended the name of a cardiologist who could help with this. It was simple and easy – and it felt too easy. Afterwards I felt as though I had left my body, or was somehow a light, fuzzy mist around myself. I was there, but not quite there. On the first page of my five page “health document,” underneath my name, date of birth and basic details, I have a section called diagnosis, with the dates and names of each new addition to this list: Diagnosis: 28/11/14: Pulmonary embolism, Factor V Leiden Deficiency. 27/11/16: Endometriosis. 29/11/16: Reduced gut motility with gastroparesis, slow transit through the small bowel, constipation, globally dilated small bowel as noted on gynecological laparoscopy. 20/12/16: Syrinx on spine. On Saturday I was able to add: 10/02/18: Hypermobile Ehlers-Danlos syndrome, clinical diagnosis. I phoned my mother to tell her the diagnosis and she was heartbroken. But I didn’t feel sad or angry as I had expected to. As hEDS is a genetic condition, it is something that has always been with me. It is not an invader. It is the reason I walked at 18 months, the reason I needed a pencil grip, it is how I was able to impress my friends with my flexibility at school. It is why I have big eyes and soft skin. It has confirmed that the excruciating pain in my back that has seen me hospitalized was, as I suspected spinal disc subluxation (partial dislocation). I feel it is part of who I am. In my experience, being ill and in pain is significantly worse when you don’t know what’s causing it. The part before diagnosis can be frankly traumatizing. The stress of which can significantly worsen your overall condition. But now that I have a name for the problems I am are facing and I have become part of a community. The walls around me have been lifted and I no longer feel quite as isolated. The rheumatologist who diagnosed me has begun me on a road of lifetime holistic treatment. They also believe I am eligible for a three week intensive physiotherapy hospital based course, in which, with others you learn all you can about your body and how to live well. Having a mostly invisible illness or disability will always have extreme challenges in a society that seems to correlate how someone looks with how they must feel. But if I am to return to the analogy of the court case, I suppose the case is ongoing, only I now have an expert legal team and for now the jury is on my side. Getty Image by KatarzynaBialasiewicz