In This Series: 1: Chronic Illness | 2: Dynamic Disabilities | 3: Outdoor Access | 4: A Day In The Life
Part 1: Chronic Illness
By: Sarah Rupp, Spoons of Salt
I am Sarah Rupp, Vice President of the nonprofit organization Spoons of Salt. I am someone who lives with multiple invisible illnesses and want to tell you more about invisible disabilities. One of the most common causes of invisible disabilities is chronic illness. These disabilities occur in our bodies, so they are not easily visible, affecting the nervous system, thyroid, heart, lungs, colon, bladder, skeletal system, and more. Invisible chronic illness is our passion and purpose at Spoons of Salt.
Although invisible, chronic illness is one of the most common causes of invisible disabilities and is misunderstood. Some examples of these disabilities include:
- Dysautonomia which affects heart rate, blood pressure, and digestion.
- Fibromyalgia, which causes chronic pain, fatigue, and sleep disturbance.
- Ehlers-Danlos Syndrome, an inherited disability that weakens connective tissue causing soft and stretchy skin and blood vessel abnormalities.
- Myalgic Encephalomyelitis (ME/CFS), commonly called chronic fatigue syndrome, a disability that causes severe fatigue that is not relieved by rest.
Because these and other autoimmune disabilities happen inside the body, strangers, acquaintances, and even friends and family may assume nothing is wrong. But on the inside, we are experiencing symptoms of chronic pain, dizziness, nausea, fatigue, or a myriad of other symptoms. Doctors often fail to recognize and accurately diagnose these disabilities.
People with invisible disabilities are often victims of interpersonal ableism and microaggressions. For example, we may be accused of faking disability or being “lazy” or “dramatic” for needing accommodations because we otherwise look healthy. Some people with invisible disabilities have even been confronted with using things like accessible parking or motorized carts at the grocery. We may even start to internalize this ableism directed at us and doubt that we are disabled enough to deserve to use accommodations that will make our lives easier.
A well-meaning compliment, such as “you don’t look sick,” or tests coming back normal at a doctor’s office are another example. These invalidate our reality of living with chronic illnesses. I often experience this as someone who appears young and healthy.
Some people with disabilities chose to “mask” their disability in the belief they will “fit in” at work or in the community. People with invisible disabilities may choose to “unmask” their disability by using a mobility aid like a cane, walker, rollator, or wheelchair to make their disability more visible.
But invisible disabilities are real, whether you can tell if that person is disabled or not. In the next article in this series, Spoons of Salt founder and president, Chelsea Matherly, will talk about dynamic disabilities and their intersection with chronic invisible illness.
In This Series: Not All Disabilities Are Visible (4 parts)
- Series Part 1: Chronic Illness
- Series Part 2: Dynamic Disabilities
- Series Part 3: Accessible Outdoor Spaces
- Series Part 4: A Day In The Life: Living with Dynamic Disability
Authors: Sarah Rupp and Chelsea Matherly, Spoons of Salt (SpoonsOfSalt.org)
Source: Southeast ADA Center (ADASoutheast.org)
English