May is Ehlers-Danlos Syndrome Awareness Month!
Sing it out, sing it loud!
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is a rare complex disease that is a genetic condition which affects collagen, a connective tissue everywhere in your body, including your joints, ligaments and tendons, skin and organ tissues. This a a multi-systemic condition in which symptoms result in widespread pain and chronic fatigue.
Why should you care?
You may know someone affected by EDS or hypermobility and may not even realize it. Symptoms can vary widely from patient to patients, leaving some looking like they aren’t ill or suffering. Doctors often misdiagnose, gaslight, or even dismiss patients, pointing to easy “solutions” which leave patients with struggle to receive care, many patients average 10-12 years before getting appropriate care.
Why the Zebras?
Zebras are the symbol for rare diseases so patients identify with the stripes. Doctors are often trained to “think horses, not zebras, when you hear hoof beats”. Horses being a common disease (arthritis, the flu, etc). A zebra representing the less expected possibility.
What can I do to help?
Raise awareness!!! Someone you know or maybe you yourself may be suffering. The Care-e-oke challenge is to engage people who don’t know about this rare condition. You can also donate to EDS related non-profits or support groups to help advocates and medical providers to better support the EDS community.
This is by no means an exhaustive list—I encourage you to search out your own local advocacy and support groups:
Dysautonomia International
Hypermobility Syndromes Association
Ehlers-Danlos Society
Ehlers-Danlos Support UK
EDS Research Foundation
Pathways To Trust
Patient Advocacy Foundation
The Zebra Network
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I've recently found out that July is disability pride month.
I personally still struggle to apply the word disabled to myself, primarily because of the classic 'not enough' mindset. I was diagnosed with fibromyalgia a few months ago, after my symptoms worsened drastically following a car accident and concussion.
Maybe it's partly because this time last year, most of my body worked the way it's supposed to, minus some pain.
Maybe it's because I can still walk and function, though the duration and frequency I'm capable of has plummeted.
Maybe I would still feel 'not disabled enough' if I was paralyzed. Who knows. But 'disabled' is a word I struggle with right now, despite fibromyalgia being listed as a disability. Classic imposter syndrome, really.
However, it's a lot easier to use the words 'disability' and 'disabled' when talking about my 3 year old daughter.
Not because she's currently, actively disabled in the way adults with Ehlers-Danlos Syndrome are, but because of how likely it is that she will be disabled to some degree as an adult.
My 3 year old, who has already had a dislocation.
My 3 year old, who has been in physical therapy since before she could sit up.
My 3 year old, who will most likely be in physical therapy her entire life.
My 3 year old, who won't be able to play the majority of sports in school.
My 3 year old, who will inevitably notice all the things her (fraternal) twin can do that she can't.
My 3 year old, who already knows when to bring me the children's tylenol.
My 3 year old, who is already familiar with chronic pain.
I'll tell you right now, that last one is gut wrenching. To know that my tiny, innocent child deals with chronic pain already... There truly aren't words.
So, while I'm still a bit uncomfortable "claiming" disability pride month for myself, I will loudly claim it for my child.
Fibromyalgia flag credit: @bees--on--toast
Ehlers-Danlos Syndrome flag credit: @eddies-spaghetti
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Physical Education Class and Ableism (AKA, 'Is my invisible disability actually invisible, or do you just close your eyes when confronted with a student in pain?')
I will not pretend this is a well-written discussion on the issues in PE. This is not that. This is an outlet of the grief and pain and genuine suffering that I, and many other students, felt through PE class- which goes far further than having a couple blisters after running the mile. I am in no way being dramatic or hyperbolic when I say that PE class leaves a long-lasting stain on not only self-image, but for some of us, our bodies. LONG POST. This IS personal and emotional (because years later I'm still angry at how I was treated), not a purely fact-driven dissertation, though personal anecdotes are relevant to the topic, and my emotional biases do not invalidate my points.
TW for ableism and brief mention of ED behaviours (clearly labeled and easy to skip over). This was definitively NOT fun to write, and I quite dislike talking about exactly how much disability affects me but I'm honestly angry enough to not care right now. Because every time I think about how I was treated, I get angrier and angrier. The wound grows deeper with each year I have to process it. I just want this to reach anyone else who is as angry about it as I am to reassure you that you have every right to be angry. A hell of a lot more people should be mad, too. I want people to get mad reading this. If you want, share it. Put it on tiktok without credit, for all I care (though actually please don't do that). If nothing else, just listen to kids when they say they're in pain.
To preface, I have never been able to do a push-up. Never. My shoulders and elbows just cannot support me. Any time we did push-up tests, I'd just sit on my ass because why hurt myself trying to do what everyone around me could do with ease? As for curl-ups, I think I peaked at 27 once. I never ran the mile in under thirteen minutes. Never did a pull-up. Was always last in every activity consistently (even during Ramadan, as a non-muslim who was not fasting- which, Ramadan and PE expectations are a WHOLE other topic that I am not educated enough on to make comments on, so I digress).
There were maybe three things I was good at, though. I could always far exceed everyone else in stretching and flexibility tests, and I was uniquely really good at gymnastics and hurdles, of all things. In retrospect, this is due to the leg flexibility needed for hurdle jumping, and I'm flexible due to disability- I'll get into that soon, though.
All of which is to say, I was bad at PE.
No matter what we did, for the most part, I'd be lagging behind and dizzy and in pain.
At first, I tried to push through and ignore it, determined to not fall too far behind my classmates. I was already a weirdo in the special ed program, didn't need another reason to feel like an outcast. I was already, at that point in time, missing large chunks of the year due to 'psychiatric help' stays, to put it mildly. So I just tried to keep up and never could.
Eventually, the complaining started. Or rather, the advocating that fell on un-listening ears. I started telling my teachers that running hurt and I didn't know why. That I was out of breath and my head hurt. This went on for a couple years and every single time the answer was 'well, you'll get half credit for the class if you walk today, but if you do that too much you'll fail'. So basically the answer I was given was to run with everyone else or fail class.
I started having a crunching knee. A clicking kneecap. Ankles rolling. Progressively getting worse over time. I started running with a limp. I started lagging even further behind. I started giving up entirely, opting to walk and take a bad grade because I could not keep willingly and actively hurting myself. One time, I even almost passed out after the mile and was told "well, put your head between your knees and see if that helps, then go back inside and get ready to go to your next class".
What that response told me was that I was being dramatic and lazy. The lack of seriousness they took it with told me I was just being overdramatic. So, I started believing them. Every time I walked up the school's stairs to the second floor, knees hurting and chest heaving, I just told myself I was out of shape and needed to work out more. I convinced myself I was lazy, just like they thought I was. I tried to get better. I tried to exert myself more and more in class only for it to hurt more and more.
The harder I tried, the worse I got.
I didn't understand it. Everyone around me was doing the same exercises and getting faster and stronger. Everyone else was improving or at least staying at the same levels of health. I was deteriorating, no matter how hard I tried to get into shape. I wasn't trying hard enough, maybe. SKIP RED SECTION IF ED TOPICS ARE TRIGGERING FOR YOU.
Maybe I was overweight, I thought (not true and led to some very bad habits that made me worse). I'd go from not eating lunch one day to eating two the next, trying ANYTHING that would make me feel like I was putting in the 'effort' to be healthier. Maybe I needed more food and more muscle. Maybe I needed less food and less fat. I'm sure we can see how this was an issue (that could have and would have been avoided had I been listened to).
RED SECTION OVER.
I was roughly thirteen to sixteen through all of this, if my math adds up (which it very well may not, since we can also put math in the disability zone for me).
I still get stuck in this thought pattern. I'm still working to get rid of these thoughts and attitudes in 2023. My last PE class was in 2018 if I recall.
I started skipping class. I was getting panic attacks and hiding out in the halls, in the bathrooms, trying to strategically schedule counselor meetings, doing anything I could to avoid PE class and the pain that came with it.
Eventually, though, after an eternity of pain and being told to suck it up, I stopped PE classes and fulfilled my credits for them (how I passed, I have NO idea- I can only guess my IEP team pulled strings for me behind the scenes). Only after this did I learn I had Ehlers Danlos Syndrome and Postural Orthostatic Tachychardia Syndrome (and some other random stuff that's less pertinent but definitely didn't help).
Ehlers Danlos or EDS is, to put it simply, a joint/connective tissue disorder characterized by hypermobile, super flexible yet weak joints that are prone to injury and dislocation. It comes with a plethora of comorbidities and other symptoms that aren't as relevant but still made it harder for me to work out.
Postural Orthostatic Tachychardia Syndrome, or POTS, is where your heart rate spikes when you stand from sitting or laying down, causing dizziness and blacking out. For me, it also results in chronic hypoxia- low oxygen.
During exercise, my joints were not strong enough to take it. My joints would not stay in place and this caused injury. Want to know one of the owrst things people with EDS can do? High-impact repetitive exercises. Like running. The POTS made me dizzy and weak, and I couldn't get enough oxygen to sustain the level of exertion required of me to run.
I am now not ALLOWED to run by my doctor. I'm still working on finding a way to work out that is safe for me because the truth is, most exercises are NOT safe for me. Granted, exercise in specific ways are actually helpful and considered treatment, but this is with a physical therapist and medical professionals who know how to help you work out in ways that will help and not prove to be detrimental.
Safe to say, PE class is not that.
And here's the thing. Ehlers Danlos and POTS are what are known as invisible disabilities. Unlike amputees or people whose disabilities altered the physical look of their bodies, my disabilities are all internal. But they aren't truly invisible.
My teacher could have seen the way I was white as a sheet and stumbling after attempting the mile, the way I would almost black out once I finally sat on the grass. She should have seen the way I winced as I got up from sitting every single time. She saw me limping when my kneecaps were sliding OUT OF THEIR SOCKETS as I ran (but she likely assumed I was being dramatic and faking that limp). Invisible disabilities are not truly invisible. Through the easy bruises, the never-healing injuries, the blood pooling, the pallid faces and the hyperflexible joints, the rashes and reactions, through the pain and through all the times I tried my damn hardest to vocalize these issues, it was immensely visible if someone was willing to see it or listen.
She only ever saw the issue when I started to skip class because I was getting panic attacks about attending.
The last interaction I ever had with my PE teacher was at Graduation.
We had an outdoor venue due to Covid. By then, I'd had diagnoses for Ehlers Danlos, Postural Orthostatic Tachychardia Syndrome, and various other things, and I'd been out of PE for three years (I took two years of pe freshman and sophomore year, none during junior and senior, and had one extra year for a veterinary science thing).
I had seen her during our practice round, which took place in our gym. I'd asked her about the amount of stairs at the venue and about how much standing was needed, explaining my disability to the same woman who would force me to run with it. She said she'd make sure she was there to help me through it and to find an accessible way to get through the venue.
I get to the venue and she's nowhere to be seen. I walk to the area we were told to go to, no teacher in sight to take me to any shortcuts or to keep an eye on me. I sit in the line of students on the hot concrete behind the stage (where everyone else stood) in my comfiest, most supportive shoes that clashed with my graduation dress, among the girls in their best heels.
I graduate in the same way I took PE class- without her help.
Afterwards, she finds me. After I've walked and sat on hot concrete and sweated and been dizzy and steadied myself on walls and the ground.
She says, in the most condescending voice I could possibly imagine, that I seem to have been fine without her help.
It was obvious to me. This final act, this final stretch of forced self-sufficience on my part had solidified it to her- I had never needed all the help I had seeked. All the complaining had been just that- complaining. Skipped classes were truancy. To her, I'm sure I'm long forgotten as one of the lazier students she's ever had.
I don't recall her name but I remember her face as clear as day. I remember how I felt every damn time I walked to the dressing room, the pain as I took my backpack off in the locker rooms and felt how much my back hurt from it. I remember her every time my knee crunches as I stand up from my desk chair, every time I'm out of breath. Every time my shoulder aches after tossing a stray ball to the kids across the street from my grandmother's house.
I remember how she made me feel.
I want to wave my cane in her face. I want to make her take my vitals and WATCH as the blood rushes out of my face as I stand, to WATCH as my heart rate goes from 65 resting to 120+ as I stand up. I want her to hear how my joints crack and pop and snap. I want her to see my kneecap sickeningly glide out of place and into the side of my knee. I want her to have been in the same room as my mom and I when my Cardiologist said my oxygen levels from POTS hypoxia could have been confused with that of someone in heart failure. I want her to know how I cried in the car after that appointment.
Not because I want her to be miserable and sick with guilt, but because I want to prove to her that I wasn't a liar. I wasn't faking it. i wasn't seeking attention.
But I can't do any of that, not that it would help anything if I was able to and did. All I can do is sit here and type and seethe, as my wrist pain starts to shoot into my forearm and as my hands and feet grow cold from blood pooling- I've been sitting and typing too long, and now my hand skin is mottled and my feet are growing purple with that so-called 'invisible' disability that nobody saw in me.
I don't want consolation. I don't want pity. I don't need sympathy, though I appreciate it. What I want is for this to stop happening. I want disabled people to be seen and to stop being forced to do things that are harmful to their bodies. I want for schools to stop giving a letter grade to someone's health. I want some random thirteen year old to not have to go through what I did at their age.
I WANT PEOPLE TO FUCKING LISTEN TO KIDS WHEN THEY SAY THEY'RE IN PAIN.
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Mating Chance (Long Claw Pride Book 3 and LumberCats Series Book 2) by Brooke May.
Cricket Adams is a mountain shifter in the Elkhorn Pride, her family owns a logging company and she has a son, but his father, her first mate, was tragically taken from her too early, so she threw herself into work and being a single mother, all while suffering from the loss of her mate. Boone Claw is a mountain shifter from the Long Claw Pride and as one of many siblings, he has been told of the mating call from a young age and he has also seen other family members being affected by it, so when it comes to him, he is more than ready to meet his future.
One day Cricket is working as usual when all of a sudden, the mating call hits her, but she is confused and terrified because she has already had a mate and cannot believe that it would come for her for a second time and nobody in her pride have ever heard of it happening either. Boone pretty much drops his life as a logger with the forestry service near his Long Claw Pride lands, to go find his mate, however, when he meets her, he is in shock at her reaction, especially finding out that she is in the same profession as his family, but the surprises don't end there.
As Boone and Cricket slowly get to know one another, her reservations and emotions are all over the place and she is amazed at how patient Boone is being, but she is also surprised at his reaction to when a certain Mr Grace appears, he is a human who is becoming a definite thorn in her side, but is he ever going to take no as an answer to his questions and what will become of this second mating chance, will it end in rejection, or romance? This is another spicy romance where emotions run high and challenges are made as two shifters come together to find their future amid uncertainty and confusion.
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