By Barby Ingle, PNN Columnist
Recently an interesting hashtag started trending on Twitter: #WhenICallMyselfDisabled.
Cassie, a friend who also has chronic pain, sent me a message to make sure that I had seen it. I am so glad she did because it sparked something in me that I didn’t even know I had an opinion about.
There are so many people in the chronic pain community and we all have different disabilities, diseases, genetics, treatments, healthcare, etc. Even people with the same diseases and conditions can have different levels of disability.
There are many legal and governmental definitions of disability. For example, to qualify for Social Security disability, a person must have a physical or mental impairment that has lasted or is expected to last at least 12 months and which prevents them from doing a "substantial” amount of work.
The American with Disabilities Act broadly defines disability as a physical or mental condition that substantially limits one or more major life activity.
Often healthy people have a tough time understanding what we live with or the challenges we face on a daily basis. That’s where #WhenICallMyselfDisabled comes in. It can help us explain our own personal definitions of disability and how being disabled impacts our lives.
The first time I pulled up the hashtag on Twittter, I didn’t plan on sharing it. I was just reading through various tweets when my personal lightbulb went off. When did I start considering myself disabled? How do I define it?
Here’s how I responded on Twitter:
Here's how some people responded to my Tweet:
It's a life of pure hell isn't it? This is called living???😟😟😥
Oh, I can so relate hun. 💟
Me three. I’m tired & in constant pain. Don’t make me wait in lines, stand at counters, walk stairs, etc. It’s not cuz I’m lazy I gd walked 4,000 miles once! But of course, everyone assumes it’s cuz I’m unmotivated & they hope that pushing my limits is tough love lesson I need.
I later went to Facebook and shared a longer version of my Twitter message:
#WhenICallMyselfDisabled it’s because I do not know when I will be able to physically attend an event or have to leave early due to lights, noise, fatigue, having a seizure, a pain flare that no 1 can see but levels me, migraine, having an asthma attack from walking or smoke... I could go on, when was the last time I slept, when is the last time I vomited from the pain, is my hand working or is the dystonia attacking today. I could go on and on!
I call myself disabled because I can’t sing, dance and cheer the way I used to. I could go on and on... Despite being disabled, I do my best to be my best and be the best me I can be. Being disabled just means it takes me longer, I have to find another way to accomplish things in life, I still have value and worth.
I didn’t know if my Facebook message would resonate or not. I just had a feeling how powerful this hashtag could be in helping others understand we may look normal and fully functioning, but don’t take our looks for granted. Here are a few tweets I saw after my post on Facebook.
#WhenICallMyselfDisabled I am acknowledging that my body is different but normal.
#WhenICallMyselfDisabled I feel like I finally really understand my body and mind and can accept them as they are. I have so much more confidence moving through the world, and acceptance (from myself) that the accommodations I need aren't laziness or selfishness.
My Facebook message received more than 80 likes, comments and shares, so I know it resonated with my pain friends and “non-disabled” friends. It was an outpouring of support and helped lift stigmas that society often puts on people who need some extra help, assistance or time.
Knowing that no matter what disability I have that I still have value and worth makes me feel so much better. I’m glad the hashtag trended. It could have been a pity hashtag, but I found it to be socially educational and meaningful. I am glad so many others joined in before and after me. A message like this can go a long way to change how we are viewed.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
More information about Barby can be found at her website.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.