Featured Image Description: the Disability Pride Flag, featuring a lightning bolt shape of blue, yellow, white, red, and green lines combined overlaying a black background. You can find its symbolism here.

It’s been Disability Pride Month all July and I have something I’d love to share, finally! (My demand-avoidance does not like having to write themed posts within the correct time period, go figure.)

Bella, the Goldendoodle. She has light golden hair with a white chest and white around the tip of her brown nose and atop her paws. Her eyes are hazel green and she’s wearing a very large open-mouthed grin. A happy pup.

This is Bella, my mom’s dog. Mom kind of acquired Bella by accident. Granted, Mom was looking for a puppy, but the litter that she was hoping to get one from had already all been claimed. However, just before Christmas, the breeder called my mom up and told her that someone had returned a puppy, and wondered if Mom would be interested in purchasing her. Naturally, Mom said yes.

A picture of Bella in front of a white door where she looks like Simone from Disney’s “The Lion King”, who is pictured to her right for comparison.

Now, while I don’t agree with the existence of breeders per-se, and I think Mom should have gotten an older dog from a shelter, period, I am very grateful for Bella in my life. She’s a lot to handle, as Goldendoodles aren’t exactly even keeled, especially this one as she’s more Golden than Poodle—she’s a doozy. Even so, she’s more than not a delight and brings a lot of joy to our lives.

Pictured above: To the left, Bella and I sitting outdoors in frame, looking off to the distance. I have short, bleach-blond hair, and lines of black eyeliner across the bottoms of my eyes and on the bridge of my nose in a unique design. I am wearing a blue tie-dye shirt on. Bella has a purple collar and bright golden fur. To the right, Bella is looking over her shoulder at the camera, her tail curled up toward her face. She has a open grinning mouth and brown nose, happy as can be.

You might be wondering why I am writing about her for Disability Pride Month though. Well, I’ll tell you: it’s because we share the same connective tissue disorder, Ehlers-Danlos Syndrome (Hypermobile type III, or hEDS). Granted, Bella has never been diagnosed officially, but I know what my disease looks like, and dogs can and do have autoimmune/connective tissue disorders. 

Here’s a list of some symptoms, just so you can see it too:

  • Incredibly lax and stretchy skin (it’s absurd how far I can pull her fur away from her body)
  • Hypermobility (like SUPER hypermobile, she can turn herself into a ball where her head is far overlapping her rear end; I swear she could be an owl with how far she can turn her head too)
  • She’s ridiculously clumsy (like, no proprioception—the body’s ability to sense movement, action, and location—at all)
  • Chronic illness of others sorts such as bad allergies, upset stomach, and UTIs
  • Beyond sensitive skin (we think she’s allergic to metal or something, but she’s constantly needing medication)
  • She braces herself when she sits (has to do with hypermobility, where one must find external support, move around a lot, or hold oneself awkwardly, as the joints do not hold themselves together properly)
  • She can’t play for more than 5 minutes at a time; she stops to either eat grass because of her stomach or to catch her breath (I’m assuming she’s usually in some kind of pain)
  • Her gums are super sensitive and it takes next to nothing to cause them to bleed

SO yeah, Bella has been incredibly expensive to take care of due to illness and I’m glad she’s my mom’s dog and not mine. That being said, I love the ever living crap out of her. It’s been a wild time reliving some of my medical and social trauma through loving and taking care of Bella, but it’s also been healing. 

Pictured above is 3 photos of Bella sitting oddly, where she’s bracing herself by relying on her front paws for support, her hips sprawled out.

There was one time where I came home to find Bella unable to move well at all. She had overexerted herself playing with some new doggy friends at the park earlier that day, and when I came into the room, she tried her best to hobble over to me, but it was a tragic attempt. Seeing her like that shocked my system. It was in that moment that I knew without a doubt we shared the same connective tissue disorder. I crumpled to the ground, with sobs racking my body as I hugged her close. I knew the pain she was in, and the strength that it took her to want to move at all towards me. I saw how pure her love was at that moment too—to want to be close to me and still feel excitement through the pain. Quite the trooper.

Pictured above, Bella and I are sitting outside, and I am wearing a red, blue, and white flannel atop a green shirt with Grogu on it. To the left, Bella and I are gazing out past the camera. To the right, Bella and I are looking towards each other. I am smiling and she has a little “blep” tongue out.

Seeing that shared lived experience in an entity that’s other than human just…I don’t quite know how to describe what it’s done for me. Like of course it’s great to relate to other humans and learn from their experiences and heal together in our sharing, or sometimes just commiserate without healing, but I don’t know…there’s just something about relating wordlessly with an animal. I honestly attribute the phenomenon to my autism, as it’s an indescribable experience. My words truly fail me here. (One stereotypical trait of autistic individuals is to relate better/be more comfortable with animals than people.)

Photographed above: On the left, Bella sits as an 8 week old puppy, posed in a Christmas landscape to the left with a stuffed snowman, Christmas tree, a red present, lots of red tree ornaments, and golden bells with a golden bow. Bella has a tiny green ribbon bow atop her head. To the right, Bella is lying down atop some fake felt snow, with a stuffed candy-cane under her right ear. She has a red starred bow on her head and is wearing a sweater that looks like a green-wrapped present with a red bow.

As beautiful as that experience was, it is, however, hard to deal with Bella’s health on and off. It makes me confront the not-so-far-off past of not having answers for most of my life about why I am the way I am. (I frequently have to disengage as memories flood my mind about how much I’ve been dismissed and discriminated against for the symptoms I’ve endured.) The vet keeps treating her symptoms, but it appears there’s a lack of understanding of why she is the way she is. I’m grateful they keep trying to find better food for her though, and they have meds for her allergies too. 

Picture above is Bella wearing a sparkly blue and silver Happy New Year top hat that matches her blue protective collar (used the same purpose as a cone of shame lol).

The good of our relationship though? She teaches me how to rest, how to be proud of my strength and love, how to stay and live in the present moment. She grounds me to the earth and to my body. She is my friend.   

Here we see Bella assisting (read: distracting) me from writing this very article. And you can see how she uses my as a backrest because it’s hard for her to sit up right, just as I have a hard time holding myself up because of hEDS. Kindred spirits, her and I. I consider myself very lucky.

So, all this to say: Happy Disability Pride Month. It’s things like this relationship I have with Bella that I seek, to bring me joy and peace amidst the chaos and pain of chronic illness. Thanks for reading!

Featured Image Caption: 1 year ago on March 9, 2021, a Facebook post by me, Jaesic Feathers: Welp, it’s official. The geneticist diagnosed me with hEDS without testing. As it stands, hEDS doesn’t have a genetic marker. My history is consistent enough with his experience with hEDS patients that I now have a diagnosis. Neat. I’m looking forward to when I don’t feel so empty inside about this. 20 years. It took 20 years for me to get here.

Since this day last year, I have been on an incredible journey of self-discovery and community building. Because of this diagnosis, I’ve been able to start healing my relationship with my body, a relationship where I actively love myself through my pain, seek out accommodations and better routine, and allow myself more grace when things go haywire. It’s been really hard, but I’m getting better at this, and I’m so grateful to finally not hate the vessel that allows me to interact with this plane of existence. It’s sad that it’s taken me this long to get a diagnosis, and even more sad to only just now be on my way to a healthier relationship with my body only AFTER I’ve been medically validated (because being gaslit, patronized, condescended to, dismissed, antagonized, etc. for over 2 straight decades really does do a number on your self-efficacy and esteem; an all too common experience for AFAB people in medical treatment).

FINALLY I am medically valid enough to have medical professionals who take me seriously and work with me to manage my pain and body’s ability. Fucking life changing. Also life changing? Finding people who know what this dynamic disabled life is like. I am beyond grateful for the connecting capabilities of the internet and to my fellow zebras who have offered their own stories and support over the past year. Finally I feel seen and valid and not alone in my health journey.

Being human is hard enough, and then we add medical discrimination because of biases and prejudice, both in medical and personal life. PLEASE listen to people when they talk about their bodies! 9/10 times they are NOT hypochondriacs! And even if that 1 person is, what else is going on that is causing their brains to be so hypervigilant about their health?? What support is not yet present in their life?

Listen. BELIEVE. Stop judging. Respect. Support. We all deserve to feel seen, heard, and valid. And we all deserve the support we need!

If you’re a fellow zebra, I would love to connect with you over your personal journey and to stand in solidarity with you. Please leave me a comment or shoot me a message through the contact tab on my website’s menu! Sending you so much love 💜🌈💜

A learning opportunity: we no longer use “invisible disability” but instead use “dynamic disability”. Please see the images below to understand why! (This term is also applied to autism, and other forms of neurodivergence.) Thank you 🥰

First image: Created by Asiatu Lawoyin, the Intersectional Autist. Reach them at asiatucoach.com or @asiatu.coach on socials. Image says: “Invisible Disability”: Disabilities are only “invisible” out of ignorance. Invisible is centered within the outside perception & decenters the disabled as well as ignores our internal realities. Also, disabled behaviors rarely are truly invisible.

Second image: What is a Dynamic Disability? A disability which tends to fluctuate in severity (pain, energy, etc.) in a difficult to predict manner. Those with a dynamic disability are able to do certain tasks at one time but unable to complete those tasks at another time. Created by @joannanobanana on socials.

Third image: Autism is a “dynamic disability”. What this means is capacity & functioning are not concrete & may fluctuate dependent on factors such as environment, cognition, executive function, processing capacity, interoception/exteroception, neuro-fatigue, anxiety, communication differences, burnout & sensory overwhelm. This means Autistics may be capable of a task one day, but unable to perform the task at another. Made by Neurodiversally Unbroken 2021.

Featured image says: Disability isn’t a bad word. Credit to neurowonderful.

This barely scratches the surface of what I experience because of this disease, but here’s a taste:

This is my life with Hypermobile Ehlers-Danlos Syndrome, with chronic illness. Bad things happen out of the blue, and I just have to carry on with the pain. But sometimes it’s physically impossible to do so, like it was last night.

I’m up today, committed to doing work so that I may one day be self-sufficient and financially independent, but being confronted with things like last night make it hard to believe that independent life is even possible. I’m on day three of limited mobility and excruciating pain that won’t be touched by western medicine.

I take my pills dutifully, and they do help day to day. But not for days like these. I’ve taught myself to cope without crying, because crying always makes it worse. Sometimes I can’t hold it in though, and while that release is important, it always has bad physically ramifications. I’ve tried everything I can think of: heat, ice, rest, stretching, over the counter meds, prescribed meds. Nothing touches this pain, this restriction. It literally feels like my lungs are being held prisoner in my own body. I can’t move certain ways or a sharp pain will stab me like a knife. I just want it to stop.

You’re not even seeing the full extent of pain I’m in because even in this video I am masking it. The pain I’m in day to day, and then in these kinds of moments, is genuinely unbelievable if you haven’t experienced it yourself. But I’m asking you to suspend your reality a moment and believe that what myself and many other disabled folk go through, is real. I have 20+ years of conditioning to maintain basic functioning, which you see in this video. It took 20+ years to learn to not cry, to not shout in rage, to honor my body through living with the pain.

Somedays I am capable of exercising, working all day, and engaging in social activities. Some days I can do those things but with limited engagement. And then others I literally cannot do anything. I’ll need help getting from bed to the bathroom. I can’t wash a dirty dish. I can’t even use my phone or laptop because my upper body is too fatigued and in pain. And then some days it feels like I literally can’t breathe.

I am always *me* in any of these circumstances. If you can believe that I am happy and doing well when you see me as such, why does that belief end as soon as I show you what’s underneath?

– my thoughts on being gaslit by friends, family, and medical professionals

Living like this is exhausting. I’ve made so much progress since getting diagnosed correctly last year. In fact, I’ve made so much progress that sometimes I feel like a normal human who can do normal things. And then days like these last three slap me in the face and remind me that I am in fact not normal. The back and forth gives me horrible mental whiplash.

My disease isn’t who I am, no. But it does limit the “who” when it comes to what I physically can and cannot do a lot of the time. It’s a lot of mental gymnastics to get me feeling like I can accomplish anything, but I rebound each time because I know I have a lot to offer this world.

All this being said, disability is not a bad word. I am disabled, and that brings new perspective and compassion for others. So please, when you’re out there in the world judging people by what they can and cannot do, consider that those people are going through things you can’t even imagine and have some compassion (this isn’t just for the disabled either). Consider circumstances before you judge, and even in your judgment, hold some compassion. If you’re an employer, see how you can make your working environment more accommodating. Same for educators, public officers, medical professionals–anyone with power to make a difference. How can we make our society beneficial for all? TALK with the people affected! See their needs and meet them where they are. BELIEVE their lived experience. No more gaslighting!

And if you struggle with “invisible” or “silent” illness, I see you. I love you. You are not alone.

Zebras Unite!

Zebras? Why are we talking about zebras? I thought this was about your weird health condition, Jae?

I promise it will make sense by the end, keep reading!

This past March I was finally diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS, also known as EDS Type III). At once I felt validated but also angry, which then turned into a inner hollowness that was hard to shake. Why had it taken more than two decades to get me to this point? Years of pain and suffering to be told, at last, that something was actually wrong with me, despite all my normal lab tests and “can-do” attitude. My entire life, I have been treated like I’m crazy and lazy by people who were supposed to help me; I’ve been gaslit, dismissed, and condescended to. While misogyny definitely played its role in my missed diagnosis (and misdiagnoses), EDS is not well known by most physicians, despite its growing prevalence. At last I found the right professionals who took me seriously enough to look outside the box.

So what is EDS anyway?

so studious

Ehlers-Danlos Syndrome is actually a spectrum disorder, with 13 different subtypes. I happen to have the most common type, Hypermobile EDS or EDS Type III. According to the EDS Society (at ehlers-danlos.com), all of these subtypes are classified as connective tissue disorders “that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. . . Accurate estimates for the occurrence of hEDS are lacking, but a minimum of 1 in 5,000 people are thought to have EDS, 80–90% of which are cases of hEDS.” And yet, hEDS is the only subtype to not yet have its genetic marker (gene mutation) discovered.

“The best way to describe hEDS is as an autosomal dominant disorder influenced by age and gender with symptoms more common in females.”

– Ehlers-Danlos Society

In Claire Smith’s publication, “Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder,” she defines hEDS:

“by the association of generalized joint hypermobility, joint instability complications, widespread musculoskeletal pain, (minor) skin features and/or pelvic/rectal/uterine dysfunction. . .”

She continues to list other signs and symptoms:

  • chronic fatigue
  • acute and/or chronic pain, which is often widespread, with possibility for neuropathic pain
  • poor proprioception (your inherent understanding of where one’s body parts are in space)
  • reduced response to local anesthetic
  • functional gastrointestinal disorders, often associated with IBS or sluggish bowel
  • bladder over-activity and pelvic floor weakness
  • asthma-like symptoms
  • cardiovascular autonomic dysfunction
  • anxiety, phobic states, and depression
  • reduced mobility
  • earlier than ‘normal’ osteoarthritis
  • tethered cord and chiari malformation (brain tissue issues)
  • Mast Cell Activation Syndrome
  • sprains, subluxations, dislocations, tendon tears, disc prolapse, and skin that can stretch, scar, or bruise more easily are all more prevalent in EDS patients

This is a very truncated list, and it is not exhaustive either. More and more symptoms are being associated with this condition as people have been taking it more seriously in research, and as community members come together to relate to each other.

Essentially, my body does not produce collagen properly, which adversely affects my joints. My muscles are overworked from trying to hold all the pieces together. I haven’t quite researched enough to understand my comorbid conditions yet, but they’re often the source of most of my pain, discomfort, and disability. I experience different forms of pain and fatigue everyday of my life, usually without rhyme or reason to it. If I don’t exercise enough, I suffer. If I exercise too much, I suffer. I never get enough rest. I rarely feel hydrated. I can be fine eating an item one day, and the next it will make me sick. No position that I’m in—sitting, standing, lying down—is ever comfortable and usually brings me different forms of pain depending on the day.

This disease affects every aspect of my life, and has effectively rendered me disabled in one way or another (this will be its own post soon).

Now let’s take a quick look at my hEDS:

  • “growing pains” in my legs that didn’t stop when I was 10/11, which forced me to quit dance and contact sports, as well as landed me in a wheelchair for a few months at the end of 6th grade (have since subsided into only periodic episodes)
  • widespread musculoskeletal pain (considered to be fibromyalgia); acute and chronic depending on the day; myofascial related
  • neuropathic pain (pins and needles, tingling, numbness, electric “zaps” especially through to my hands)
  • episodes of muscle weakness, especially in upper body
  • chronic fatigue (often debilitating)
  • super soft skin when I was a child; at 27 my skin is still soft, but incredibly more stretchy and just hangs on my features, especially on my face; easy bruisability/fragility
  • stretch marks without weight gain
  • hypermobility in my shoulders and hips; complications with wrists, elbows, knees, and ankles
  • Snapping Hip Syndrome
  • poor proprioception (I have always been clumsy, run myself into doorframes and other things, constantly spill drinks on myself, the list goes on…)
  • pelvic flooring weakness (I have been mildly incontinent since childhood); pain
  • hyperflexible, though I’m not a contortionist
  • spina bifida (small hole in my spine)
  • cervical spine instability
  • flat feet
  • sleep disturbance (complicated by neurodivergence)
  • Irritable Bowel Syndrome; constipation/diarrhea
  • acid reflux
  • frequent bouts of nausea
  • depression/mood issues/anxiety (complicated by neurodivergence)
  • astigmatism, convergence insufficiency, and frequently dry eyes
  • painful menstruation cycle (pretty sure I have endometriosis but have not been diagnosed yet)
  • painful intercourse (not all the time, but enough to notice)
  • dysautonomia (poor “fight or flight” and “rest and digest” function)
  • poor temperature regulation
  • electrolyte abnormalities/dehydration (I literally have to take salt capsules; so far, not that effective)
  • headaches/migraines (complicated by neurodivergence)
  • complications with my TMJ (jaw joint and muscle): locking, popping, subluxation, pain, teeth grinding, temple headaches; I also clench my jaw like a fiend, but is not strictly hEDS related
  • fragile gums
  • swallowing difficulties
  • episodes of changes in speech
  • episodes of difficulty walking
  • brain fog (complicated by neurodivergence)
  • impaired immune response (until the last 2 years, I have gotten significantly ill with colds and flus for 2 months of the year on average)
  • MUSCLE SPASMS EVERYWHERE; ranging from benign and annoying to absolutely debilitating/painful
  • Mast Cell Activation Syndrome; incessant post-nasal drip, itchy throat and inner ear, hives, flushing

All this, in addition to athletically induced asthma and hypothyroidism.

Overwhelming much? Tell me about it.

It’s genuinely hard to keep track of all the crap my body and I have gone through over the years. I’m almost positive I’ve missed listing at least two things above, but memory is affected by this too (on top of the effects from trauma and neurodivergence). 🥴

At last! Zebras!

“In medicine, the term ‘zebra’ is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. . .”

– ehlers-danlos.org

In the 1940s, medical researcher and professor Theodore Woodward coined the term “zebra” with the phrase, “When you hear hoofbeats behind you, don’t expect to see a zebra.”

But too often, doctors forget that “zebras” do actually exist. The zebra is the symbol of the EDS community because EDS is considered a rare condition. My symptoms have confused and confounded doctors, family, and myself since early childhood. Then EDS finds its way to me, and suddenly everything makes sense. ALL of my symptoms are related.

Even though there is no cure for this disease, just knowing how I am medically valid in my suffering has helped SO much for coping. Now I have new resources, community, and a curated medical team to rely on in order to figure out how best to manage my symptoms and still have good quality of life.

I am particularly grateful for my fellow zebras. For the first time in my life I feel fully seen and understood when it comes to my pain, daily struggles, and future fears. No two zebras have identical stripes, and no two EDS affected folk are the same. But when we come together online, seeing those shared similarities, being able to commiserate, and learn from each other has drastically improved my relationship with my condition, as well as my mental health (though admittedly sometimes seeing everyone’s issues does have the opposite effect, and I do have to step away for a bit).

A silver lining: I absolutely adore how the word for a group of zebras is “dazzle” because we definitely dazzle together.

Despite the dazzling, living with hEDS isn’t pretty.

I will say, however, that I am grateful for the perspective it’s given me over the years. My condition is a part of what’s taught me to have compassion for not just those who are hurting visibly, but also for those who might have something going on under the surface. After all, my hEDS is an invisible disease for the untrained eye. It’s also helped bring me to understand how pervasive ableism is in nearly all facets of society.

My hEDS does not define me, but it IS a lens through which I see and experience the world. I hold onto that fact throughout the bad days, and celebrate the good days when I can.

Stay tuned for Part 2: What in the Pain?