Why Riding the Bus With a Hidden Disability Can Cause Anxiety
Over the last few years, I have been diagnosed with a slew of chronic illnesses all within the scope of Ehlers-Danlos syndrome (a multi-systemic connective tissue disorder that causes its own myriad of issues). At 29 years of age, I have a herniated disc sandwiched between two instances of osteoarthritis in my lower spine, as well as hypermobility issues causing multiple subluxations in my shoulders (think partial dislocation or an unstable joint). Some of the symptoms of my diagnoses include, but are not limited to: vertigo, nausea, pre-syncope, paresthesia, anxiety, depression, chronic pain, and chronic fatigue. I require significant help from my partner and roommates to do things around the house (like clean and even feed myself) and run errands. Leaving the house takes a lot of effort and energy on my part and can, more often than not, leave me bedridden for consecutive days on end. So, when I do find the energy to leave the house and need to use public transportation, it’s a big deal.
As someone with an invisible illness that is associated with chronic pain and fatigue, riding the bus can cause a lot of anxiety over not being able to find a seat. Standing for extended periods can cause pain and fatigue to worsen in people with hidden disabilities. For those of us who have hypermobile joints and joint instability like myself, standing for extended periods can cause joints to become weak and give out (which can translate to falling and/or injuring ourselves), and even for our arms to subluxate or dislocate when trying to hold onto the railings. Suffice it to say, not being able to find a seat when riding the bus, even just one way, can sometimes expend all the energy I have for the day. This is not conducive to running errands, going to work or to school, or even wanting to go out and enjoy myself for a short moment in time.
At this point, I’m sure you are saying to yourselves, “Why doesn’t this person just ask for a seat?” Believe me – I have tried. Asking able-bodied patrons for their seat can cause a lot of anxiety, and even conflict, as to them, I may appear to be able-bodied. They don’t see the chronic fatigue and pain, the nausea, vertigo or the numbing of my arms – and even dislocation of my shoulder when I reach above my head for the railing. And at the end of a long day, they don’t see the tears I shed from being in pain at night. I shouldn’t have to prove myself (explain to strangers that I have a chronic illness and what my symptoms are) every time I want or need to ride the bus.
As a person who has used my local public transit system since the age of 10, almost on the daily to attend school and/or work, I would sincerely appreciate a system to be developed for folks like myself who have invisible illnesses to have better visibility when using public transit. I believe it is the operator’s responsibility to advocate for people like myself, who struggle with chronic pain and fatigue, to help make people aware of us when using their systems so that we may find seating – just like they do for those who are pregnant, have vision issues or are using mobility aids.
Major cities around the world, including Toronto, have started to make changes to help make their city’s transit more accessible for people with chronic conditions. Toronto’s Transit Commission is currently running a campaign that reminds able-bodied people to give up priority seating for those who need it. My suggestion is that other public transit authorities follow suit, as well as provides its disabled patrons with a button, lanyard, tag or something equivalent that they can wear to signal to other passengers that they are in need of priority seating. It is my hope that in the near future, public transit in my own city, as well as throughout my province and even country, will rise to these challenges with open arms and open hearts to make the future more accessible to its patrons.
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