Things are not always as they seem; the first appearance deceives many.”Phaedrus
The Invisible Disabilities Association (IDA) has declared October 13th to 19th as Invisible Disabilities Awareness Week 2019. The IDA, a U.S.-based non-profit, is attempting to raise awareness of the fact that not all disabilities are visible, and therefore, head-off misunderstandings. When a person’s illness is not visible, there is often a tendency to not believe the individual is ill or in pain.
Why is Awareness Important?
All too many people who suffer from Chronic Invisible Illnesses have experienced judgement from others at some point or another. This may be due to their lack of activity, tendency to back out of engagements, or use of mobility aids or handicapped parking/bathroom services. These can lead to unfortunate confrontations. It is actually, too bad that we need to raise awareness on this issue. I can tell you from experience, that a person who suffers a chronic illness wishes nothing more than to be healthy, strong, pain-free and completely able to perform day to day activities.
There are many cases of people without mobility aids who use disabled parking being confronted in parking lots or having nasty notes left on their windshields. I recently read a post by a young woman who uses a wheelchair; she faced judgement when she stood up in public for a photograph. Onlookers accused her of ‘faking’ her disability. I have often toyed with the idea of obtaining a scooter or wheelchair as my particular illness makes it difficult for me to walk any distance, making shopping our going for a walk more than a challenge. I was inspired that this young woman was not letting her disability hold her back from living life to its fullest (as I recall she was visiting an amusement park, something I would have to rule out at this point). Unfortunately, some people ruined the experience for her by their uninformed comments. This is why it is so important to raise awareness of the special challenges facing those of us with Invisible Disabilities.
Even Doctors and Healthcare Workers May Misunderstand
When I was at my lowest point with scleroderma I was hospitalized several times. I was extremely weak and in a great deal of pain from myositis, kidney failure, and myocarditis. As an inpatient a porter takes you to and from treatments. After weeks in hospital, returning just two days later as an outpatient, you are no longer transported within the hospital. Immediately people begin to say, “You look so much better.” Seeing as how I was feeling almost exactly the same as a couple days before, I can only assume it was the fact that I was wearing street clothes and shoes? I guess this is when I noticed my disability was becoming less visible…
While my condition began to stabilize with on-going treatments and new medications I began to notice changes in the doctors’ clinic notes. I try my best to keep a symptom journal and report any changes, including flare-ups of fatigue or pain, to my doctors when I see them. As I have chronic pain I only mention it now if it is much worse, but clinic notes use phrases such as, experiencing some discomfort or she is feeling a bit of pain. Should I happen to wear a touch of makeup to my appointment or get a hair cut, suddenly I am considered doing very well! I understand that part of caring for others is assessing their outward appearance, but it is very important for caregivers, healthcare workers (including doctors) to listen to the words of their patients more closely, particularly when they suffer from an invisible disability.
Chronic Illness is a Marathon
For me, some days are good, many days are bad. My Occupational Therapist always advises me to pace myself, particularly on good days because if I overdo it on those days, the next will inevitably be worse. Unfortunately, when you live with a person with a chronic, invisible disability it can be challenging. At first, there is a great deal of sympathy, but as days turn into months and years, it can be a real drain on your family and friends. It is a marathon for all involved and can become grueling.
What seems to be particularly challenging is when you show signs of improving but cannot sustain the activity level. Those who are nearest to you may wonder why you have gone back to resting more again? They may begin to question your reality and motives. It is not uncommon to hear folks with invisible disabilities being accused of being lazy. This is likely one of the most emotionally damaging accusations you can make towards a person with a disability. Life with chronic illness is a see-saw of pain and guilt that you can no longer do all you could before, for yourself and for your loved ones.
Let’s Spread Awareness
It is for these reasons that it is so important that we spread awareness about Invisible Disabilities, not just this week, but all year long. Like all awareness campaigns, we must educate society in order to bring enlightenment. It is as easy as creating a post or re-posting #InvisibleDisabilitiesWeek articles, infographics, memes, pins, etc. on Social Media. Donations can also be made to various organizations.
This campaign is not to find a treatment or cure for invisible disabilities as they cover a wide spectrum of diseases and injuries. The point is to find a cure for apathy and ignorance, raise sensitivity, and hopefully provide that one missing piece of the puzzle that everyone with an invisible disability needs so much… understanding.
Have you encountered misunderstanding around Invisible Disabilities? Please feel free to share in the comments area below.