Dr. Ralph Jones, a Chilliwack-based doctor has penned an important article on living life with an invisible disability. Living life with a disability can often be a challenge, but a person whose disabilities are not necessarily obvious face additional barriers; the fact that people do not necessarily understand the person is coping with a disability. Some of the disabilities that are often unseen are:
- Chronic pain
- Learning disability
- Mental illness
- Head injuries
- Chronic Fatigue
- Lyme Disease
- Thoracic Outlet Syndrome
- Non-cancerous tumours
- Inflammatory Bowel Disease
People who cope with an invisible disability often find themselves in a situation whereby they need to talk about their disability because of the barriers they face which are not obvious to others. According to a recent U.S.-based survey, 74% of Americans with disabilities do not use technical aids or assistive devices.
“In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment. It is quite unfortunate that people often judge others by what they see and often conclude a person can or cannot do something by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable, as well as those who appear able, but are not.”
All too often one of the primary barriers or challenges people with an invisible disability cope with are negative attitudes and derogatory comments from others who know nothing about the nature of the person’s situation. For example, as a person with spinal arthritis, I often get comments such as: “You look fine; what’s the matter?”; “Well, why don’t you do something about it?”; “Can’t the doctor do something?”; “Can’t they just give you a medication for that?”; “I can’t see anything wrong with you.” These are just a few of the comments people have thrown at me when they learn about my disability. All too often people believe that since we live in a world with many spectacular technologies and medical devices that people shouldn’t have pain or cope with a disability. It is a common misconception. There is not a cure for everything, and there is not always an answer for every single condition in the world.
Another aspect of this same problem is the Internet. The proliferation of both factual and non-factual information on the Internet often does more harm than good. People read an article by “someone” (often the credentials go unchecked) and think they know the answer for another person. This is denigrating and disrespectful to people with disabilities such as myself who cope with an invisible disability. The Invisible Disabilities Association (IDA) provides the following information:
“The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person…International Disability expert, Joni Eareckson Tada, explained it well when she told someone living with debilitating fatigue, “People have such high expectations of folks like you [with invisible disabilities], like, ‘come on, get your act together.’ but they have such low expectations of folks like me in wheelchairs, as though it’s expected that we can’t do much” (Joni).
A 2008 Toronto Star article highlighted the issue with an article on a woman by the name of Carolyn Matthews. After a devastating car accident, Carolyn who was a police detective sustained a traumatic brain injury. The ramifications of the injury were memory problems which persist to this day.
For people with an invisible disability navigating the world can be a challenge. When I go out to do my errands, it’s painful to walk up and down the steps on the streetcar, in buildings, and try to reach for items on higher shelves, as well as simply go about my day. People say things to me like; “Be glad it’s not cancer”, or “At least you’re alive and you’ve got your health”. In fact, millions of people do not have good health and that is the very nature of their situation. People often assume too much about others. The assumptions people make can also be debilitating and isolating. All too often people are told to “be strong”, or “buck up”. They give examples or scenarios of other people they know are strong and cope well.
Ten things NOT to say are:
1) “You have what? I’ve never heard of it.”
2) “You need to exercise more.”
3) “Aren’t you feeling better yet?”
4) “Maybe an anti-depressant would help.”
5) “But you look just find, you don’t look sick.”
6) “You are taking too much medicine.”
7) “You need to change your diet.”
8) “It’s all in your head.”
9) “Losing weight might help.”
10) “If you had a more positive attitude.”
However, everyone has a different way of coping. The truth is, however, that not everyone has the same support network. Some people have financial resources that others do not and so they have access to a multiplicity of treatments not covered by universal healthcare such as: acupuncture, massage therapy, homeopathy, naturopathic care, chiropractic, or physical therapy. None of these are covered and can cost thousands of dollars when added up.
Here is some positive advice on this issue and 10 things you CAN say to a person with an invisible disability:
1) How are you doing today?”
2) “Is there anything I can do to make things easier for you?”
3) “I am here for you, whatever you need.”
4) “It must be very difficult to have a disease where you feel so awful on the inside but it doesn’t show on the outside.”
5) “I am so sorry that you are going through this.”
6) “I wish I could take away your pain.”
7) “I hope you are feeling better soon.”
8) “I will keep you in my thoughts and prayers.”
9) I may not completely understand your disease or what you are going through, but I would like to.”
10) “I am sorry I judged you before understanding your disease and what you are going through.”
Next time you meet someone and learn they have a disability, try to imagine how you would feel if someone judged for having a condition or situation beyond their control. People with invisible disabilities are, like everyone else, doing the best they can. Yes, we certainly live in a more tolerant world, and the situation is improving all the time. But, there are still challenges and barriers. The biggest barrier continues to be peoples’ attitudes.