What is the PHNA
After considerable discussion with our PHNA membership and observing social media trends on this subject matter PHNA decided to put together a project of their own to promote awareness of people who have chronic and disabling diseases and conditions. In mid 2015 we were successful in our application for a Grant through the Connect Groups Association "Live it Forward Together" initiative to assist people living with chronic health conditions across WA. These grants recognise that Self Help and Support Groups make a critical contribution to health service delivery in Western Australia. Connect Groups will broker funds to Support Groups across a range of capacity building activities with the key focus on the self management of chronic conditions. The funds will provide practical assistance to both new and established Support Groups to facilitate their important and growing role in our community.
Many people who have a legal permit to park in the Acrod bay are often confronted and even though sufferers have the right to park in these bays we are still finding that the general public does not always understand why the person may have a need to use the bay especially if they do not look physically unwell, which can lead to confrontation and great distress. Many people living with invisible diseases are often already battling with family, friends or work colleagues who may not fully understand their situations so this page is dedicated to information and links to help with this and our project is to help raise awareness and educate.
After some worldwide research we found this is definitely a universal theme and after posting our new decals & posters (below) we had a huge response from everyone all over the world posting different captions and pictures, it was amazing. Our designer has been working on a range of items for pulmonary hypertension, a generic invisible disease sign as well as suggestions for other conditions that we have encountered that need their profile raised and many of our PH members also suffer from. For more information please contact phna.info and to order your FREE car dashboard decal (below).
"But you don't look sick!" Responding to People Who Don't Understand an Invisible Illness
Members of the pulmonary hypertension community respond to a common question or concern by sharing their knowledge and experience.
"But you don’t look sick!" How do you deal with people who don’t understand your disease or condition? I try not to talk about my illness a lot because I do as much as I can to live without fear, so I have seen people startled when I use my handicapped placard (which I do only on tough days or in tough situations). Someone in my life used to encourage me to put on the O2 cannula even if it was not in use to sort of justify the placard or moving slowly. My feeling is that it is their issue, not mine. If someone has something to say, go ahead. They will just embarrass themselves. — Willa Hope Farley
I try to be patient. I say thank you but flash them my pump and say something like, "Yes, sometimes PH doesn't show, but my cardiologist keeps me conscious of what a serious illness I have." — Joanne Sperando-Schmidt
I have said to bus drivers questioning me about the Medicare disabled discount on my bus card, "What would you rather see? My diseased lungs or my sick enlarged heart?" It shuts them up quick! — Alex Flipse
I am always red from my medicines, and I am always getting questions like, "Oh my goodness, where did you just get back from? Where did you go and get all of that beautiful sun?" And I always reply, "My couch — I am sorry my medicine does this to me. I am on three very potent vasodilators that make not only my pulmonary arteries open up, but all of my other pathways in my body open too, giving me this beautiful red glow. Thank you so much for noticing." — Tara Suplicki
I always try to use any negative comments, or confrontation towards the use of my ACROD permit as a time to educate about PH. Invisible and rare diseases and tolerance towards those in the community living with them is still a subject that is evolving. No one should be subjected to harassment, but it's the world we live in. Generally people are willing to listen or they quickly make excuses and move on. You do what you can. - Melissa Dumitru
This article is adapted from the winter 2016 issue of Pathlight, PHA's quarterly magazine that offers pulmonary hypertension news, information and feature stories for patients, caregivers and healthcare professionals. Pathlight is a member benefit.
Below is the PHNA car dashboard decal to display next to your Acrod permit. Also available in magnetic form for your car door (price on request, card decal free, A5 size).
What is an Invisible Disability?
In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.
In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.
According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment (Disability Discrimination).
Furthermore, “A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults)” (Disabilities Affect One-Fifth of All Americans).
Often people think the term, disability, only refers to people using a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% 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.
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.
Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have invisible disabilities. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they live with invisible disabilities.
Unfortunately, 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.
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).
The bottom line is that everyone with a disability is different, with varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes.
Need help getting your friends and family to better understand the invisible nature of your illness? Check out the book But You LOOK Good.
But You LOOK Good - How to Encourage and Understand People Living with Illness and Pain. Do your loved ones have a hard time understanding your chronic illness or pain, because to them you LOOK fine? But You LOOK Good! is a book that gives those living with chronic illness and pain a voice about how they feel, what they need and how others can be an encouragement to them. It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest!
This book gets to the heart of why our friends and family have difficulty with understanding ongoing illness and pain. It serves as a tool to help explain to loved ones how extreme fatigue, pain, dizziness, cognitive impairments and other symptoms can be limiting, even though the person may not look sick or in pain. Moreover, it gives them simple, pragmatic ways to truly be an encouragement, what to say, what not to say and how to help. Often loved ones are enlightened as to why their well-meaning advice is not always well-received. It is cherished by both those living with illness or injury, as well as those who love them!
LIST OF ILLNESSES THAT ARE CONSIDERED INVISIBLE DISABILITIES:
We do not maintain a list of specific illnesses and diagnosis’s that are considered invisible disabilities. Invisible disabilities are such symptoms as debilitating fatigue, pain, cognitive dysfunctions and mental disorders, as well as hearing and eyesight impairments and more.
There are thousands of illnesses, disorders, diseases, dysfunctions, birth defects, impairments and injuries that can be debilitating. Therefore, all conditions that are debilitating are included when we talk about invisible disabilities throughout the website. However, our focus is not to attempt to provide a vast amount of information about thousands of specific conditions (there are plenty of websites that do that).
We are here to provide awareness, education, connection and support for everyone who lives with a debilitating condition. We do this by offering articles, pamphlets, booklets, resources, radio, video, seminars and more to give hope and compassion to all living with invisible disabilities as well as information for loved ones to better understand.
If you would like to suggest a link to an organization or foundation that provides information about your specific condition, please send it to us through the contact page. We would love to hear about it!
Have you ever thought about sharing your person journey with illness and pain?
Be a part of the
Invisible No More Campaign
Join the Invisible Diseases Community
Disabilities Affect One-Fifth of All Americans, 1997
Disability Discrimination eeoc.gov/eeoc/foia/letters/2011/ada_definition_disability.html
Americans with Disabilities census.gov/apsd/www/statbrief/sb94_1.pdf
Joni Eareckson Tada. Joni and Friends International Disability Center. www.joniandfriends.org/radio/2006/7/5/invisible-disability
Stories from "I Resolve to Believe You"
Resources from IDA