Conclusion

What You Can Do

As disabled individuals, we understand there are many preconceived notions about us. These kinds of misunderstandings intensify in the case of rare diseases like EDS that are considered "invisible".
We are used to having to explain our condition and symptoms to everyone including doctors.
We are constantly accused of being attention-seeking because "it can't possibly be that bad!", or that we "just need more discipline".

We are used to losing the respect and companionship of loved ones and colleagues due to something we were born with and cannot help.
Certainly, discipline and lifestyle changes can improve one's quality of life, but the solution to the fight against EDS is unfortunately not that simple. But, to educators, employers, and loved ones, there are some things we ask you to consider:

Please be patient
- Sometimes we will show up fatigued, covered in compression gear, or using mobility aids. Other times, we must take time away due to flare-ups, infections, injuries, surgeries, or appointments. But we are doing our best, and want to deliver the highest quality of work that we can.
We are still people, just with different boundaries
- When made aware of our condition, others tend to either play it down as insignificant and refuse to provide accommodations, or, treat us as too fragile to be capable of doing anything but lying in bed. We are aware of our limits and have spent our lives pushing them.
It is OK to ask
- This varies depending on the individual, but oftentimes, we would rather just be asked should you be curious about something. Whether this is about a symptom, accommodation, or if we can or cannot complete a task. Asking is always better than assuming.
Spreading awareness helps win the fight
- Research suggests that EDS and its comorbidities may be slightly less rare than initially presumed. You never know who may benefit from learning more, it could be a loved one or even yourself!

F.A.Q.

(Mobility aids! 2 canes, one of my 2 walkers, and a wheelchair.)

Q: What does all of this even mean?

A: Given the symptoms above, many people question how people with EDS go about their lives. Yes, it is challenging to attend school, work, and family matters as a disabled individual. But, we are forced to learn to make accommodations and are stronger for it. This often results in:

Varying use of mobility aids
- Occasional use of canes, walkers, and potentially wheelchairs depending on the intensity of flare-up/injury
Wearing multiple layers of compression gear alongside splints for dislocations/sprains
Frequently needing to sit down for short periods of time due to pain or comorbidities like POTS
Completing tasks at an efficient but mindful pace to prevent dislocations and check heart-rate
Practicing a strict diet
Carrying essential oils for the treatment of nausea and inflammation
Requiring a period in new environments for weakened immune system to adjust to new bacteria
- Wearing masks, gloves or using hand sanitizer in an attempt to avoid colds or infections
Asking for clear and concise instructions (combats brain fog)

It is important to understand with the proper accommodations and respect, people with EDS are just as reliable as able-bodied students, employees, or friends. I cannot emphasize this enough.

Q: (Workplace) Why ask for accommodations? Do you really need them?

A: Accommodations provide equity so that we may offer the same quality of work as our able-bodied peers. Darcey Robinson for The Mighty wrote an impactful article on this topic you can find here titled "I Won't Apologize for Getting Job Accommodations Because of My Condition". The article encompasses why we need accommodations, what accommodations we may want to ask for, and additional information on EDS (as well as its comorbidities!) in an under 5-minute read.

Q: (Education) Does EDS affect intelligence? Why ask for accommodations?

A: This ChronicPainPartners article explains this fabulously and I highly suggest giving it a quick read.

"Many adults living with Ehlers-Danlos Syndrome (EDS) are highly intelligent, motivated and hard-working individuals looking for the opportunity to learn and contribute to their communities. They don’t want their the limitations of their disorder to hold them back, but they may need extra accommodations from their educational institution."

Q: Why Zebras?

A: Ehlers-Danlos Society put it best:

"Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”