Photo Credit: Olivia Martinez/Achona Online/Piktochart
I have Crohn’s Disease, Arthritis, and Osteoporosis. I wrote this article to help others better understand the misconceptions and stereotypes surrounding disabilities and chronic illnesses, which comes with insensitive comments and actions that can offend members of these communities.
Merriam-Webster dictionary defines a disability as “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.” The word “disability” can be used to describe a wide range of conditions, such as hearing or vision impairments and Arthritis. On the other hand, a chronic illness or disease is defined by the Centers for Disease Control and Prevention as “conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both.” The disability spectrum includes visible and invisible disabilities, whether mental or physical.
“Some individuals have visible disabilities which alert others almost immediately upon greeting. However, many people have more hidden or subtle disabilities. These can manifest in health or learning needs. We never fully know how each individual manages her or his difference, so it’s always best to treat that person as an individual rather than a stereotype of that disability or health disorder,” said AHN Learning Specialist Dr. Julie Omodio-Griess.
People often associate disabilities as solely pertaining to those with a wheelchair or assertive device, but the reality is quite the opposite. Many believe that because they cannot see the disability, it does not exist and can cause members of the disabled community to doubt the severity of their condition.
Chronic illness can be used to define many different diseases. Unfortunately, having a chronic illness can have side effects that make it difficult to live our daily lives. Chronic illness is associated with constant fatigue, which can make long days difficult. No matter how early we go to bed, how late we sleep in, or how many hours of sleep we receive, we are always tired. A lot of times it can be difficult to concentrate and focus due to our medications. This becomes a challenge at work and school, since it takes longer to do work.
Our health can change as often as every hour, which makes it very difficult to lead normal lives. When we address our pain, it can be assumed that it is an intense pain. Having been sick for so long, our bodies have built a high pain tolerance. At times, there are no words to describe the pain we feel, and it is difficult to talk to others about it. We often do things that can seem weird to distract ourselves from our pain. We are trying our best to live normal lives and to feel fine, but we need time and support.
It is false to assume that having a disability makes one less capable of doing things.
“Sometimes individuals do not know how to respond to those with differences, whatever they may be. Typically well-intentioned, they register that someone with a disability may be in a state of distress and decide to assist them. In most circumstances, this aid is immensely appreciated and can bring about a great deal of relief. But, just because someone may be opening a door or grabbing something up off the floor in an unfamiliar way, does not mean that they are struggling (or even in need of assistance). Because of this, the person with a condition can feel as though they are a burden. Thoughts often cloud their mind, causing them to wonder why someone would want to help them. The conclusion that they almost always come up with is: “they feel bad for me,” said Clare Grammig (‘21).
Over time, we have understood our bodies better than anyone else. Though many comments come from a loving place, they should not define our limits.
“Conditions can change, diseases can progress, and physical endurance can worsen. What someone with a disability can do one day, may not be possible the next (or vice versa). There are some who do not quite grasp this concept or understand how polarizing it can be. In some instances, it can even be a toss-up for disabled individuals. When an activity is simply too much, they are fully capable of knowing when that is,” said Grammig (‘21).
Those limits have been established in collaboration with our doctors to best suit our current health. We have found our own way to do things and do not require constant assistance. Knowing that there are people that are willing to help, helps establish a feeling of having a support system. The most anyone can ask for is people who care about us and understand us to the best of their ability.
Unfortunately, many people say insensitive comments regarding disabled persons without realization of their negative connotations. We understand that most things are said with good intentions, but they can still be perceived as hurtful. One of the most common phrases said is “You do not look sick/disabled.” There is no single, universal disabled or “sick person” look, and we attempt not to let people see the detrimental effects of our illnesses.When going through a health flare-up, it is difficult to let others in. It can be difficult to accept that our health is declining. With illness and disability, our physical appearance can change with our health.
Simple reminder to never judge a person’s level of health based off of what they can or cannot do. Just because you can’t SEE them struggling doesn’t mean they’re not! #spoonie #ChronicPain #chronicillness pic.twitter.com/1AuXpdVUJl
— Flowly (@officialflowly) September 14, 2020
One of the most harmful things that can be said are comments regarding our appearance. Our appearance changes with our health, whether it be weight gain or loss, hair loss, or skin tone. When our health is declining, we are at our most vulnerable, and people begin to notice our appearance changing. Be cautious in sharing comments about appearances, because they can be perceived negatively. When we decide to share positive changes about our physical appearance, it is best to respond with a positive comment, such as: “you look really good,” “I am so happy for you,” or “I am glad you’re doing better/improving.”
Another common phrase said by people is, “It is not as bad as other people.” There are others who are in worse condition, but that does not mean that we are not struggling. When people say things of this nature, it can feel as if our symptoms are being invalidated. It is difficult to go through pain on a daily basis and have others not believe the pain is real or minimize the severity of our symptoms. Having built a tolerance to pain, we are not inclined to tell others about our pain. When we do, it can be assumed that it is serious and possibly unbearable pain. We have all gone through periods where our health is horrible, and we understand it can be worse. We are grateful for the state our health is in, and we sympathize with all that are in worse conditions.
People often suggest that changing our diets will improve our health. At times it may, but we have tried every possible treatment until one has worked for our body. The major issue is not our diet; it is the illness that builds a resistance to medications. We are even hesitant to change our treatments at the recommendation of our doctors. When we find a routine that works, we follow it until it no longer suits our needs.
The most important thing anyone can do is spread awareness and educate others about disabilities and illnesses that affect our community, rather than believe misconceptions. Please do not be afraid to ask questions; we encourage conversations about it. Every illness and disability has unique and different symptoms in the people affected.
“I love the saying that often applies to individuals with Autism, which I believe applies to all individuals with health or learning diagnoses:‘If you know one person with Autism [or fill in the blank with any diagnosis], then you know ONE person with Autism.’ Meaning that you cannot apply those characteristics to all individuals with Autism. We are all unique with our own experiences. Take the time to talk and understand to learn how others navigate through their lives,” said Griess.
Make time to check in with friends who are affected by an illness or disability, because they may be going through a difficult time. We do our best to bring some aspects of a normal life, but it is important for us to have supportive friends by our side to do this.
“Normalizing conversations about disabilities is crucial. When questions are not asked and thoughts are held back, a barrier is formed. From this point, the divide between the disabled and the abled is further widened. Dialogue and communication on all levels is key to developing, understanding, and building acceptance,” said Grammig (‘21).