Life of a Zebra: Living with a Dynamic, Invisible Disability
- venturaagatha1022
- Jul 2, 2023
- 6 min read
“Do you feel better now? Are you healing? You look normal.”
I never know how to answer this… I am in pain at all times, all of the time. What hurts and how much it hurts depends on the day and a bunch of variables I may never fully understand (aka how and how much I’ve slept, the amount of buffoonery I took part in the day before, if I ate any gluten by accident, the weather, the position of venus, the direction gravity is pulling that day… etc).
In all seriousness– for as long as I can remember, I have dealt with pain that was difficult to manage, difficult to understand. I was always pretty active and agile, but was injured often. From my earliest visits to the doctor to just 3 years ago (when an internet rabbit-hole-induced self-diagnosis journey came to fruition) doctors declared me clumsy, anxious, and simply overweight. Unaware that I have a connective tissue disorder and my collagen is trash, I continued to take part in heavy workouts and crash diets, hoping something might help relieve the pain.
In 2020, after about 10 years of consistent physical therapy and chiropractor visits, I was adamant to figure out what was really going on. Aside from the pain, I experience a lot of fatigue and have a hard time being upright, and at this time it was interfering with my work and day to day. I couldn’t (and still can’t) clean a bathroom without needing 2-3 days to recover from what felt like a full-body workout.
After visiting a few specialists (rheumatologist, orthopedist, etc-ist), I found myself cross-researching my test results and symptoms, trying to decipher this puzzle. This may sound silly, but I remember the day like it was yesterday. I was in the shower, heating my joints with the running water, when I thought: “What if I google it in reverse?” and I got out of the shower and googled something along the lines of “Gymnast late 20s that was very bendy and is in a lot of pain when older” and found this article that changed my life. This gymnast was diagnosed later in life with Ehlers-Danlos Syndrome (EDS), and the more I read about her experience, the more it resonated. That night I spammed my physical therapist via email with articles asking, “Is this crazy, or possible?” And I got an official diagnosis a few months later.
My Pain
I want to take a stab (pun intended) at explaining the pain and other symptoms I experience.
My daily pain level scale starts at your general 5. Pain can be pressure, stinging, burning, stabbing, or just an annoying dull ache.
All of my joints are hypermobile, so my body has a hard time understanding the limits for range of motion, causing instability where other parts try to compensate (across systems) and pain builds over time. I do some physical therapy in water to help train my body, but don’t fully have the hang of it yet.
There are a few spots that are always killing me, and they have either worsened or changed over time: my right knee (I had ACL surgery on it), my left hip (has some bursitis and crazy pinching pain when I walk or lay in a way it does not like, and the worst of it all is my right rib-ish(?) where there is a pain that feels like I am being stabbed from the front to the back of my rib; it's hard to get seen by doctors, and if one more tells me to just breathe better I may have to… cry.
Working out is good for the condition, but hurts a lot and is hard to maintain. There are also helpful and hurtful workouts, which took me a while to figure out.
There are a lot of ‘comorbidities’ or side-conditions that come with hEDS and every person is different. I have a little heart condition called POTS (where I have a hard time standing without feeling like passing out), MCAS (just some super allergies to a random slew of things), Celiacs (you know, the gluten sadness), and that’s as far as I’m aware of :)
Some days I have energy and feel like I can take over the world, some days I flare up and feel like I got hit by a bus (and need to sleep 6 more hours or lay in hot water).
Physical therapy and doctors who understand the condition are the only way I manage to deal! Access and support is a problem for many in this community.
Why the Zebra?
“ Medical students have been taught for decades that when you hear hoofbeats behind you, think of horses, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.”
People with EDS have adopted the Zebra as our mascot, since although it is not rare, it is rare to diagnose and often missed for a long time. Doctors are taught to consider the most common diagnosis, don’t know much about it, its implications on an individual, or their needs for care.
Why it matters (to me)
My condition is a part of who I am, it is a part of every step I take. I have had to learn to be my own advocate, have become my own medical assistant to balance doctor appointments and insurance claims, and have learned to embrace my disability and honor my limits. I am still working on being comfortable with the unknown. I’ve come very far and have a good handle on caring for my needs– but I know it’s the beginning.
Why I’m telling you
As a millennial and recovering people pleaser, it is important to me that you understand where I’m coming from (half jokes) – when I cancel a plan, call out of work, stay in bed all day. I do not always have what it takes to work upright that day.
Not to mention that finding that article and reading about that gymnast’s experience helped me figure out my biggest life questions and start my path to managing my pain. I hope this can be a resource to someone too. And if someone you love tells you they are in pain, believe them. Positivity is not always the answer!
Lastly, I want to raise awareness in honor of #DisabilityPrideMonth, to invisible, dynamic disabilities like mine. Though I may look fine, I may not always be. Think about the ways in which people may take the space and time they need to for reasons you may not be aware of, and do not generalize disabilities.
Resources:
My support
Believe it or not, I’m OKAY! I’ve read a lot of people do not like making their disability “their whole personality”, and have been really reflecting on that mindset. I feel this pain every day– I work, I care for myself and my family, I try to live a full life… and feel pain through it. So if I can continue to share to increase support whether through understanding or a helping hand… I will happily and openly share this part of me.
I have deep gratitude for my family, friends, and online group of EDS strangers (over at Facebook and Reddit) who sometimes provide more solace and support than any specialist. I also want to shout out TheraChris, my therapist, who not only helps soothe the anxieties of living this life, but also the mindfuckery of not having been believed for years, and the complexity of living with consistent pain. To all my PTs over time that believe and support me – Michelle, Cydni, Hyun Joo, Denette and Kim. And, mobility aids, MJ, heating pads and pain relief balms. Big fan of all of you!
Lastly, f*ck insurance and the US medical system (*shrug*). It is unfair that people with disabilities have to prove their pain and challenges to receive an ounce of support. It is unfair that it takes over 4 months to be seen by a specialist with a referral. It is unfair that we often have to choose between quality care and financial wellness.
Comments