No ‘X-ray’ can show the pain or panic I experience
Originally published on Global Voices
As I write this article with voice dictation assistance, a stabbing pain radiates across my back and down my leg, while intense tremors, unnoticeable to those around me, surge throughout my body. I’m not even at ease while lying down. Each time I stand up, a kaleidoscope of colors and darkness sends me into a free-falling spin. As the walls sway, I have to hold on. I panic whenever I leave home and I must always have someone with me.
Although I look as healthy as any other woman my age, the disgust towards my very existence and body at my job caused my health to further deteriorate. It’s not uncommon for strangers, even in medical consultations, to say, “What’s your walking stick for?” or “If your legs are weak, go work out.”
It took me more than five years to find specialists who, instead of considering me lazy, took my health condition seriously, thus diagnosing me just like any other patient. I’m in the 7.1 percent of Colombians who have trouble carrying out basic everyday activities. However, my disability is so invisible that there are no figures for this condition in Latin America.
‘Good morning, pain’
I try to listen to my body. I assess how I’m feeling and the adjustments I require in getting up. It’s more complicated when the symptoms are sudden, when they come and go. This means there are days when I can go to a doctor’s appointment and return home straightaway to rest. On other days, if I don’t have the energy, am in pain or floored by panic, on top of the difficulty of finding someone to accompany me, I may have to find solutions that don’t require me to leave the house.
No “X-ray” can show the pain or panic I experience. We thereby tend to avoid discussing our conditions, as we don’t need to hear any more upsetting, skeptical, and rude opinions. We also don’t want other doctors or family members telling us that we “don’t look disabled.” This is despite fibromyalgia and spinal injuries being just some of my diagnoses. If our conditions still allow us to be somewhat productive, by securing a home, food, or income, for instance, they are best left undisclosed.
The various aspects of invisible disabilities
Also known as “hidden” disabilities, invisible disabilities are physical, mental, neurological, and sensory conditions or a combination thereof. By being invisible, they limit personal activities and pose adaptive challenges. Some of their symptoms include debilitating pain, fatigue, panic, dizziness, vertigo, reduced mobility with no known cause, as well as difficulties in remembering.
Aside from individuals with disabilities like deafness, blindness, and autism, invisible disabilities also occur in those with brain injuries, cognitive dysfunction, learning disabilities, depression, anxiety, post-traumatic stress disorder (PTSD), and chronic fatigue syndrome. Likewise, they are also common among individuals with epilepsy, colitis, endometriosis, multiple sclerosis (MS), rheumatoid arthritis, cirrhosis, fibromyalgia, Lupus, myalgic encephalomyelitis (ME), diabetes, Crohn’s disease, and chronic diseases in general.
They can either pose minor challenges in everyday life or severely limit their activities. The long-term impact can be more detrimental.
Ways to break down barriers that divide us
The wheelchair logo is limiting when it comes to representing all disabilities. We often receive outraged looks of loathing and disgust when requesting reserved or accessible seating. Despite having medical records or other proof of disability to hand, people insult and attack us. We are thereby forced to give up our seats. This situation is even worse for transgender women since, for much of society, we shouldn’t even be alive.
This being the case, we must acknowledge that social exclusion exists both publicly and virtually. We must consider the ways in which physical and social barriers restrict people with invisible disabilities. Recognizing that resources can be adapted for individuals is part of our social evolution. Doing so will enable wider participation and their contribution towards building the best possible world.
Some of my recommendations for improving this situation are:
- Broaden your understanding, think before you speak, and don’t make “jokes” about these conditions;
- Recognize that we don’t have to make you feel better when you don’t treat us right;
- Respect our privacy. However, if someone tells you about their condition, listen to them, learn, and build awareness;
- Understand your peers’ expectations. For example, making direct eye contact is appropriate in neurotypical communication, but is inappropriate for autistic people or those who have experienced traumatic events;
- Communicate ideas in simple, understandable terms, using instructions that are as straightforward as possible. Also, if you can, learn sign language to communicate with deaf people;
Include audio transcriptions and subtitles;
- Use sufficient color contrast and alternative text (alt) for graphics;
- Neurodiverse people, and/or people with depression or anxiety, are more sensitive to scrutiny and noise. It is therefore advisable to cancel out noise, avoid open spaces, and be able to have flexible work schedules;
- Normalize quieter workspaces and use noise-cancelling headphones;
Use designs that ensure easier movement within different spaces, thus avoiding blind spots;
- Provide various access routes to organized locations. Remember, not everyone has a car. It is useful to clarify if there are any accessible public transport routes and provide information on which have the shortest journeys.
At least my son knows that “what is essential is invisible to the eyes.”
LGBTQ+ – Global Voices